Post Tx. Suicide

[R Glass]

Does anyone know of a study about Post Tx. Suicide, hopefully with statistics. I am not am not contemplating suicide. I have noticed a few people, through PM and Forums, (including myself) having problems adapting to life after tx. I am not talking about going through the initial Recovery Process. I am talking about the one’s that should have fully recovered long ago and realize life will probably never be the same do to tx. I am going to repeat myself “I am not am not contemplating suicide.”

[desrt]

The statistics were included in the large print package insert I received from S-P before I started tx in 2002. I remember it as being less than 1/2% including treatment and the six months following. I'm sure these statistics have gotten even smaller, as doctors have become more aware of this risk. The risk was neatly broken down into suicide, murder, and murder/suicide. Scared the cr@p out of me.

[jmjm530]

Unfortunately, very little effort or money has gone into studying post treatment symptons. That said, I would not be surprised if the rate of psychiatric problems, including suicide, is higher in the post treatment population due not only to the psychotropic nature of the drugs taken but also due to the physical and emotional insults that treatment can produce.

I always likened treatment to a war, and always felt that some of us exhibit some signs of post traumatic stress disorder (PTSD) after the smoke clears. PTSD a condition that I believe is associated with higher suicide rates if you buy into this connection.

While only a few case histories, this study discusses PTSD in the context of interferon treatment from a more pharmacological point of view:
http://psy.psychiatryonline.org/cgi/content/full/39/5/461

There are also a number of anecdotal accounts of post treatment depression in the "side effects" thread in our health pages but not sure if anything specific to suicide.

-- Jim

[Willy50]

I happen to agree with Jim on this subject.  I've sometimes likened it to post-partem depression.  Obviously, it has nothing to do with having a baby but more to do with going through a long period, coming out of it and instead of it being the magically wonderful time that everybody says that it should be; instead it can be worse, far worse.  Some of it has to do with expectations and often outcomes different than one expected.  MY "ex" had an experience with college.  She worked really hard for years with kids while in school and when she graduated....instead of everything being wonderful she went into clinical depression.  Unfathomable from the outside.

IF you follow Jim's example of PTSD read the link and see if it fits for you; it makes a lot of sense.  I believe it even mentions long period of illness or long medical treatment.  Seems to me that even heart attack survivors also come to grips with depression.

http://en.wikipedia.org/wiki/Post-traumatic_stress_disorder

My major points are don't ignore it if you are suffering with something..... that we don't yet know what to call it.  Don't self medicate to treat the symptoms.

They say that suicidal ideation.....ideas of suicide.... can be a predictor of sorts for the act itself.  Don't ignore these ideas.

I once read a little slogan that struck a raw nerve in me.  Here it is;

Thoughts are ACTS in rehearsal.

I personally believe that it is too soon to say what sides from TX are permanent.  Many people take 1-2 years to get back to normal.  Some of this may take a bit more time.  If there is depression though, please stay in touch with people and possibly consider taking some steps to treat the disorder; there are some solutions.
I think that this is a more common outcome of TX than one often reads.  Thanks for bringing it up.  It may help others as well.

best,
Willy

[portann]

This is a difficult topic and I didn't respond sooner because I don't know what to say, except that I appreciate your bringing it up.

It's so complicated, I can't get a handle on a reply. There are studies among cancer patients but the circumstances are so different.

I never forgot that British MH member who posted from Turkey, threatening suicide. I was new here at the time and was very impressed at how some of the 'older' members took it so seriously. He had recently finished tx, though, so that doesn't address your concern about longer-term effects.

Thanks for bringing this up and I look forward to hearing other people's thoughts about it.

[portann]

I know, I know. You're getting home from a long day at work and hoped to read new posts on your morning thread.

It's one of those topics, maybe, a great one but difficult.  I didn't find any studies so far but just wanted to say hi and hope you had a good day at work.

[R Glass]

Thanks to all that replied. Maybe someone out there will run across more information. I don’t think it is PTSD because I almost died about 7 years ago from Pneumonia and a year later suffered a Heart Attack (patched up with stints). Even though I went through a period of PTSD after the Attack it is nothing compared to this. I don’t walk around depressed all day even though I do have occasional Panic/Anxiety Attacks. I feel like I am 10-15 years older than I am. Before tx I was always on the go, a burning the candles at both ends type of guy. Now I am satisfied staying confined to my house. I am not writing this for pity so, please don’t. I am writing this because, I am finding out I am not alone and this is more common than I realized. I also see very little emphasis on the subject of possible permanent damage caused from tx. I am also not trying to scare anyone from treating but it is something that a person with MINOR liver damage should take into consideration before making the decision to treat. It seems the attitude is to get you to SVR and after that you’re on you’re on and nobody cares about the long-term damage.

[portann]

No pity here, just wondering, like you.

xoxo

[jmjm530]

Just added this hearfelt thread to the "Members Comment on Side Effects of the Treatment Drugs During & After Treatment. " in our "Health Page" Section.

http://www.medhelp.org/health_pages/Hepatitis/Members-Comment-on-Side-Effects-of-the-Treatment-Drugs-During--After-Treatment-/show/530?cid=64
-----------
Like R, I also felt treatment aged me ten years. Before treatment I was approaching 60 but living a life many 30 year olds would find hard to keep up with. Now, well, things are a bit different. What the interferon seems to do is accelerate everything including the aging process. It's like if you ran a new car at 100 mph, 24/7 for a year. I still think PTSD is part of the problem for some of us, but no doubt it goes beyond that.

-- Jim

[geterdone]

No comment,

jasper

[Trish77]

"  I can't say positively, but I don't think I'm the type of person that would ever entertain suicidal thoughts.  Maybe I just haven't been traumatized enough by all this or if I have I just don't know it. "

Hm.  You and I are friends ... (now I get why you say that, Jim)  ... so I'm going to say that first because I really need to address this comment head on.

I would never in a million years have expected that I would have ended up having suicidal thoughts AFTER my treatment ended.  I wasn't "traumatized" by my treatment.  I rode it pretty good, with all the ups and downs and the weekly blood tests and weekly verdicts and advocating for myself all the way through on my trial and then getting pulled from treatment at 34 weeks when I was in full battle mode. I did pretty well on treatment in spite of all of it.  I worked fulltime, took a heavy evening course for most of the time I was on treatment, stayed active in various pursuits and even won an award at work for outstanding contribution WHILE I was on treatment (never put much stock in those things but getting it while I was on treatment?  that meant alot to me.)

I had excellent QOL while on treatment, as Jim used to tell me.  No trauma here.  So where the he!! did the suicidal thoughts come from that hit me so bloody hard?  

What type of person does it take exactly that would entertain suicidal thoughts?  Wonder what "type" of person I am, since I had those kinds of thoughts?

I have to tell you, they were far from entertaining.  And I didn't exactly send them an invitation.  They crashed my party and my life.  They were not welcome and I fought like he!! to fight my way back.  No rhyme or reason for them.  I was UND at four weeks post treatment, great kids, job where I was doing well even if it wasn't my dream job ... nothing too terrible going on.  Just this black crushing pit of hell that I couldn't get out of for the life of me.

One of my close friends told me that is the only time through my whole treatment that she worried about me was after treatment when I went through that depression.  I don't know what "type" of person "entertains" thoughts of suicide.  I just know it's hit all "types" of people here that never expected that to happen to them.  If anything, it has been an incredible eye-opener for me and I hope I never have to go through that again and I wish that nobody had to.

These drugs are nasty and this treatment is nasty.  I'm glad it's not hitting you in that way and I hope it never does.  I sure as he!! didn't expect it to hit ME that way and surely not AFTER treatment was done.

Trish

[Trish77]

I'm sorry you're going through this and that's not pity.  I just simply really, really wish things would improve for you and that you get your life back.  Maybe if we're lucky we get our life back after treatment.  And maybe it's that for some of us we get our life back differently.  What a trade-off it seems for some.

When I go for my 6 month post treatment PCR, I'll also be seeing my psychiatrist, the one who specializes in the  mental impacts of HCV treatment.  I will ask him for any data he can point me to on that subject.  If I come across anything that will be relevant, I will surely pass it on.

Take care, R.

Trish

[Lady Lauri]

I am glad you posted this Ricky. And thanks to who sent it to me :)

Ricky, I am believing that you have no thoughts of suicide, yourself, and trusting that. I think I can figure your point, reason for this thread, but do know ...many of us will be concerned anytime someone brings up this topic.

I have corresponded with Ricky and many/most Geno 2's  here thru out my tx and time on med help. (and of course many of all Geno types). The majority of Geno 2's had a horrendous time with tx, unusually so. Many just pm'd quietly, not posting much,  with the fear of seeming ungrateful, whiny,  for being Geno 2-higher % of SVR-shorter tx. I always urged any to post what they needed to, as I believe it was jmjm that once said....'your pain IS your pain' , as important as anyone's is. Many Geno 1's, of course, also have a horrendous time with tx, but many also do 'well' thru it. I know maybe 1 Geno 2 that did 'well' in tx. That said....since post tx, I am just ahead of Ricky in 1 yr post, many of the same Geno 2's seem to be struggling in getting back to 'normal', having many issues still. I say all this in the area of geno types because in my trial, I asked my trial nurse, Dr. if it seemed to them that Geno 2's seem to do worse on these meds, they answered 'yes, we do see that, but we have no idea if it is a mental thing or not'. That answer, made no sense to me at all (not good enough). While my friends here were doing 48, 72, even 105 wks. tx, just 24 was taking me DOWN by wk 5. Fortunately, as I struggled thinking I was weak, a baby, these same friends assured me it was 'my pain'.  I have said before how it is just wrong that once we are done with tx....'don't let the door hit you on your way out' is all we get. No follow up for issues, no studies, etc. Anything I have brought up to my treating Dr., NP's has been ...'tx is over, you'll have to see another Dr. for testing for these problems.' Other then the muscle issues, I had none of these problems before tx.

I, as jmjm and Ricky, ran like a 20 yrs. younger person. I put younger people to shame in work and working out, energy. Not until Hep symptoms set in about 3 yrs. before tx did I slow down, ever! Willy was here right at my 1st post tx weeks, while I seemed normal, back up, it was a constant physical struggle. Bottom line, it still is, 1 yr. later.
I am not depressed, but have stayed very reclusive, happy to stay home versus go ride, go away on vacation, go out, etc. I was a total social butterfly before, interacting with everyone even at a grocery store. While I still have my 'personality', it is a struggle to be 'me'. It's very hard to word, explain. I also 'aged' more in 2 yrs. then in years, in looks and in physical capabilities.  So much is just....different. I now work with what I have, so to speak, in getting normalcy back in my life.  I hear these same things from several here in post tx.

While I believe PTSD can well be a part of it, for some, I don't feel that is it for me. I'm a total 'adapter', adjust to anything going on (as I am now) and get past things quickly, traumatic or otherwise. I definitely agree with....."It's like if you ran a new car at 100 mph, 24/7 for a year". I tend to think that for some of us it's like a long term 'injury' that takes a LOT of time to heal, and possibly long term damage. And the end result for me, at this point, is that I have to accept and adjust to the different 'person' I am now, not that it's all bad, just different. Those close to me, see the changes. I try to welcome the changes, work with them, but I miss a lot of what I was before, what life was before. Being ecstatic having SVR doesn't make these issues less of a concern, for any of us.

We don't like to say this much here as we don't want to sway anyone away from tx (I had no other choice, for me, this far beats what my life would have been with cirrhosis -halfway there at start of tx) and I hope all will respect why I am saying this, and I believe what Ricky is saying also.....is that if you have no or moderate liver damage, think HARD before you jump into tx. I wouldn't say this if not for the newer, shorter tx's around the corner with much less exposure to these drugs. Tx affects each person differently, during and after. It's one of the most serious decisions you'll ever have to make. It is not simply 'treat, cure, done'... for many. I wish Dr.'s would go more into that before jumping into tx. Mine did, but so many don't. They just say 'start tx now, heres the meds'. So many start without knowing all sides to it, without the benefit of hearing many opinions, experiences, possible issues. Which is why we're all here, thankfully. Treating IS a good thing, for many, but not necessarily an urgent thing for some. BUT, if you have Hep C and choose not to treat yet, and continue to drink, party, not adjust your habits, lifestyle to this disease and the care to slow any damage down, you better treat fast!


Sorry so long, but the issues of post tx are a big issue for me, the lack of follow up care in this.(along with I talk a lot:)  I realize I jumped way off of the suicide subject, but I think the point of tx, post issues is the point being made in this thread.

Best to all, in, post or deciding on tx, LL

[Lady Lauri]

whoa! Sorry that was a book!

[Lady Lauri]

Wow, just saw your post after my book!
I'm sorry to see that, what you went, are going thru also. I knew, at 1st you had a hard time, but lack of being here I did'nt know this much.

I never thought of suicide, ever, at all in my life. But I'd mentioned in about 3-4 wks post I went thru an emotional hell I'd never known of or could of imagined, I thought I was going, literally, crazy. It was horrible. Luckily, it leveled off, I came out of it but my family was ready to take me in, worried sick. Perhaps if it wasn't for my sister being in a fight with terminal cancer, suicide could have crossed my mind? It was that bad, an emotional, mental roller coaster. I surely hope these issues get better for you and I totally understand how it can be that bad for you, for some.


LL

[jmjm530]

I don't think this is central but thought I'd throw it out anyway to RGlass, Lauri, whoever...

How much of the post tx isolation/reclusion do you think is from perhaps losing some activities and the concurrent activity partners also sometimes referred to as "friends".

Before treatment I was very physically active in a number of active and competitive endeavors and developed what I thought were some solid friendships only to realize later that these were more activity partners than friends.  I do take my share of responsibility, however, since I didn't tell most of them I was treating for HCV, I more or less just simply stopped showing up and so they stopped showing up.

So fast forward to post treatment and I've pretty much lost touch with the group, but even if I want to touch bases again I'm no longer up for the same sort of physical activities and challenges.

I'm sure in the future I will make new bonds in different activities but in the meantime I have noticed this sense of creeping isolation and the most disturbing part is that it really doesn't bother me all that much.

-- Jim

[geterdone]

Well, I was going to open up a little but that aint happening now. (geezz)

jasper

[Trish77]

My point ... is that that it doesn't take a "type" of person.  The treatment drugs don't seem to allow us that luxury and they don't discriminate nor favour anyone.  It seems to me it's a crapshoot to some degree.  Your comment indicates that it's within our own hands. Perhaps to some degree and yet for alot of people it's entirely out of their hands.  The last thing in the world I wanted was to think like *that* after successfully navigating treatment.

I feel that one of the reasons I got through treatment so well is that I determined it to be so and mentally steered my attitude and will to get through it as best as I could. I have always approached the challenges in my life with a certain amount of "conquer or die" attitude. I suppose that's why the depression afterwards baffles me so.  No amount of willing it to go away was enough. It took alot more than that.  

I hope your certainty that it could never happen to you is enough to make it so.  It didn't quite turn out that way for me.

Anyway.  I

[Lady Lauri]

geterdone...please do! (open up a bit). I can tell u want to, have something to add ;)

jmjm, exactly- a big part of the isolation/recluse mix. Not being up to, or wanting to, do the activities, social get together's. My friends, aka...real friends, I have kept thru this and thats few of the hundreds of acquaintances I have in social scenarios. Those I don't 'miss' but do miss the want to go out there and run into them, make sense? The isolation I'm all too much accepting, which is whats bothering me the most. Turning down events, invites 80% of the time, wasn't me before. The question I can't answer is...  is this 'post tx' or..... that's the way it's going to be from now on!?

[Lady Lauri]

'Post' now being a year later, I think it's the latter!!

[jmjm530]

Maybe it's partly a momentum thing and I not only lost my momentum on treatment but I got stuck in reverse for 54 weeks. Remember Farina's book, "Been down so long it looks like up to me". If it wasn't for the fact they didn't treat HCV back then I'd swear he's talking about SOC.

-- Jim

[portann]

'He and his wife Mimi  had quarreled before leaving for the bookstore signing because he hadn't given her a present on that day, her birthday. (Pictures of her at the signing show a strained smile on her face.) It was several days before she returned to their home to find flowers, dead now, that he had arranged to be delivered while they were at the book signing.'

I never forgot that and it influenced me a lot.

To my pals here on the forum, cyberspace flowers to you all. And before the book signing.

[jmjm530]

http://www.youtube.com/watch?v=08epso8yRBQ&feature=related

[fretboard]

During tx, I would think more murder than suicide.lol  After tx, after all that hard work for someone to commit suicide is truly a sad sobering thought.  I'm sure it's one of those things about tx that everyone wants to know, but nobody keeps track of that stuff for us, the govt. agencies could care less.  In fact, and this is just my opinion, but there's alot of agencies that plop both HIV and HepC together.  Nothing against ppl with HIV, but there's a big difference between the two.  

[Willy50]

One of my earliest stories that i remember just a few months after DX and getting on a board was a female friend who was on TX.  I think that she was about to get put on anti-depressants and she was telling her doctor that the drugs were messing with her head and she was having some thoughts that were concerning her.

The doctor..... a woman..... was very gingerly asking without trying to offend my friend.....

"you wouldn't..... you aren't thinking about hurting yourself are you?" the doctor asked...

Jackie laughed......"Hurt myself?  No.......it's everyone else that I want to kill."  ; )

I know that is a little grim but there's wee bit of humor in it too.....  TX is such a **** shoot.  It seems to have a different way of affecting everybody.  I don't think that one can stave off depression anymore that one can *will* their thyroid to behave.  I know that people may repeat the mantra; it's only the side effects of TX etc, but that won't replace seratonin or whatever other chemical, mental and physical changes may occur due to TX.

One of my friends who did jail time due to some extreme psy sides says that he was totally fine physically but that it was seriously bad mentally.  It took him more than 3 years to get well.  I don't want to tell his story but it was bad, very bad and it did get better; much better.

I think threads like this are important so that people know that they are not alone and that the sides can really vary in type, severity and in recovery time.

willy

[Trish77]

Thanks for your thoughts.  I'm one of the lucky ones and I've totally recovered mentally.  Physically, I'm not 100% but I'm doing pretty darn good and I know it will come.  I'm not sure I'll ever get back to where I was but that's partly because I'm getting older, however I'm giving it a pretty good shot these days.  :)  If you go looking over on the Social side, I posted a little while back about how I've pulled up and out of the darkness and am back to my old self and then some with a vengeance and doing better than ever.  I wish it could be like that for everyone.

[Trish77]

"The doctor..... a woman..... was very gingerly asking without trying to offend my friend.....

"you wouldn't..... you aren't thinking about hurting yourself are you?" the doctor asked...

Jackie laughed......"Hurt myself?  No.......it's everyone else that I want to kill."  ; ) "

Pretty funny.

[Willy50]

It always cracks me up.  

Serious topic of course.  That friend acquaintance of mine is actually just a live wire of bad sides jokes.  His life was a freaking disaster and he had no idea if he was EVER going to make it back.  I'd love to tell a few stories but they aren't really mine to tell but.....wild, really wild.  And he is back to "normal" whatever that is; like they say, *a setting on your dryer.....*

Willy

[GSDgirl]

I don't know anything about any studies BUT I am still fighting depression and major anxiety.  Saw my first psych last night.  He upped the zoloft and had me see the the therapist this morning.  The psych commented that interferon CAN make worse a depression that was more or less already there, which I can go along with.

I do know someone that commited suicide while on treatment, one month into it.

Denise