I'm one of a kind!
Marco Sax
During my third week of treatment, because of severe dyspnea and
weakness (on top of other sides but much more manageable) my gastro doc
had me stop the cure (peginterfeon/ribovirin) altogether (despite my
resistance, as it seemed i was responding very well: ALT,AST, viral
count dropped hugely, but i wsn't really clear in my mind about the
extent of the sides i was suffering.
I might just add that I run a whole lot of test and the results showed I
was in excellent shape! No anemia, no nothing! Fact is I couldn't
breathe properly, i was very weak (on wheelcahir at hospital) close to
an emotional breakdown (bursting into crying while speaking)
To his opinion, by continuing with the cure , I could have suffered
neurologic damage!
He put me on a mild anxiolitic dosage.
Today it's over two weeks from my last shot, and sides have lessened a
lot, although I still get gasping once in a while, but the thing is
bothering me the most is I don't feel ok psycologically (confused and
emotionally weak). According to the doc, interferon has brought up a
whole lot of past unaddressed issues all together (i have quite a few!)
I have an appointment scheduled with a shrink reccomended by my gastro
as very good in dealing with this issues, but it won't be until dec the
9th.
Today I heard my gastro: he contacted Shering Plough (manufacturer of
interferon) describing my case and my side effects:
they thanked him for signaling my case, as I am the first they heard
suffering such severe dyspnea and he was damn right in stopping the
cure.
I try to take a day at the time and very easy, for the time being,
taking my blood test regularly (one this morning)
Then I'll start hoping in telaprevir, boceprevir, R-1626 and the
likes...
but.. WTF !
--
ciao
Marco Sax
greyhackles
Yikes! Sorry to read of your reaction to the treatment drugs. As disappointing
as it may be, obviously your doctor made the right decision.
Acute dyspnea in patients on anti-HCV therapy while rare is not unheard of -
although you may have set a record for rapid onset of such severe symptoms! I
haven't found anything close to two-three weeks of treatment blowing up that
badly - for dyspnea or anything else, for that matter. I thought my HGB fell
off a cliff in dropping by 50% in 8 weeks, but your case makes that look like
a slow boat ride in comparion =8-O
Hope you're feeling more in sorts again soon!
Cheers
/greyhackles
Marco Sax
greyhackles <greyh...@NOSPAMyahoo.com> wrote:
> Yikes! Sorry to read of your reaction to the treatment drugs. As disappointing
> as it may be, obviously your doctor made the right decision.
yes, but on the other hand it leaves me with very slim options (well,
none, as a matter of fact and for the time being...)
Tough luck!
>
> Acute dyspnea in patients on anti-HCV therapy while rare is not unheard of -
> although you may have set a record for rapid onset of such severe symptoms! I
> haven't found anything close to two-three weeks of treatment blowing up that
> badly - for dyspnea or anything else, for that matter.
Exactly! I might I have set a record I could well do without!
> I thought my HGB fell
> off a cliff in dropping by 50% in 8 weeks, but your case makes that look like
> a slow boat ride in comparion =8-O
The "funny" thing is my HGB hasn't dropped that much (from 16 to 12, so
still within the "normal range"!) but my symptoms were WAY out of range!
Shivering on a wheelchair, unable to move, speak or breathe properly and
close to convulsions: in this conditions i managed to say to the gastro
in a whisper: "Hey, I'm not scared by this, I just don't wanna stop!
It's now clear I wasn't in my right mind!
>
> Hope you're feeling more in sorts again soon!
working on it, thanks!
it always helps having a warm comforting word, although from a total
stranger from internet from the other side of the world (assuming you're
from across the Atlantic: I'm from Italy), but who's more or less on the
same boat!
>
> Cheers
>
> /greyhackles
--
ciao
Marco Sax
Waterspider
"Marco Sax" <saxa...@gmail.com> wrote in message
news:1j9cvae.19h6pgh1cc0wyyN%saxa...@gmail.com...
> Thank you greyhackles for your message!
> greyhackles <greyh...@NOSPAMyahoo.com> wrote:
>> Yikes! Sorry to read of your reaction to the treatment drugs. As
>> disappointing
>> as it may be, obviously your doctor made the right decision.
> yes, but on the other hand it leaves me with very slim options (well,
> none, as a matter of fact and for the time being...)
> Tough luck!
>
>>
>> Acute dyspnea in patients on anti-HCV therapy while rare is not unheard
>> of -
>> although you may have set a record for rapid onset of such severe
>> symptoms! I
>> haven't found anything close to two-three weeks of treatment blowing up
>> that
>> badly - for dyspnea or anything else, for that matter.
>
> Exactly! I might I have set a record I could well do without!
>
rapid onset.
>
>> I thought my HGB fell
>> off a cliff in dropping by 50% in 8 weeks, but your case makes that look
>> like
>> a slow boat ride in comparion =8-O
> The "funny" thing is my HGB hasn't dropped that much (from 16 to 12, so
> still within the "normal range"!) but my symptoms were WAY out of range!
> Shivering on a wheelchair, unable to move, speak or breathe properly and
> close to convulsions: in this conditions i managed to say to the gastro
> in a whisper: "Hey, I'm not scared by this, I just don't wanna stop!
> It's now clear I wasn't in my right mind!
>> Hope you're feeling more in sorts again soon!
> working on it, thanks!
> it always helps having a warm comforting word, although from a total
> stranger from internet from the other side of the world (assuming you're
> from across the Atlantic: I'm from Italy), but who's more or less on the
> same boat!
>
>>
Sorry to hear that your treatment was cut short, and hopefully you'll be
able to give it another go before long.
Psychological side-effects of peg-interferon/ribavirin are common and can be
severe. I'm wondering if you were taking antidepressants while on treatment.
If not, you obviously should have been. If so, was a change in dosage or
brand attempted? Not all types work well for everyone, they sometimes
require some adjusting before the best one is found (and then it takes
several weeks for them to take effect).
Best of luck, keep us posted, and ciao!
Marco Sax
> Hello from another stranger, this one in Canada.
>
Hi there!
> Sorry to hear that your treatment was cut short, and hopefully you'll be
> able to give it another go before long.
That doesn't seem the case, given the sides I suffered
Shering Plough, alerted by my gastro, were very surprised by my sides,
especially because they got so severe and worsened very rapidly during
the third week of treatment (in a matter of two thre days, really: going
from quite manageable to the symptoms of a terminally ill person ).
They said my gastro was right in stopping the tx right away
> Psychological side-effects of peg-interferon/ribavirin are common and can be
> severe. I'm wondering if you were taking antidepressants while on treatment.
No. Never had a history of anxiety o depression, even slightly
Never taken any in my whole life
>
> Best of luck, keep us posted, and ciao!
I will
For the time being my alt, ast are normal, and viral charge has dropped
from 4.500.000 to 60.000
But i don't have too high expectations: I expect these levels to bounce
back up again soon (unless I'm REALLY one of a kind... :)
--
ciao
Marco Sax
dBo
experiences on Tx once again!
When I began Tx back in 2006, within 2 weeks I developed a horrible
hacking cough and had a hard time breathing.
My BLCD said the cough was NOT related to Tx, was NOT a side effect of
Tx.... I saw my pulmonary doc (also suffer from Sleep Apnea) and he
agreed empahtically that the cough was NOT related to side effects of
Tx....his dianosis was COPD.
To this day, I feel that was a bit of a wierd diagnosis, since only a
couple of months prior to starting TX, I went thru the entire gamut of
tests with the pulmonary doctor, and despite being a smoker for 40+
years, he determined that my lungs were in darned good shape, I had no
serious problems (this included a CAT scan of my lungs, all kinds of
breathing tests etc!)
It seemed as tho one day I was doing fine, then suddenly a couple of
months later, two or three weeks into treatment, I had this horrible
hack-up-a-lung cough that simply would not go away. I would constantly
have to get up and leave my desk at work and go outside to just simply
try to 'cough it up" for a few minutes, because I felt I was
disrupting the entire department around me. It was awful.
The horrible hacking cough stayed with me throughout the entire TX,
along with all the other wonderful sides, low white and red blood
cells etc. I couldn't make it up a flight of stairs without stopping
to rest three times. They put me on Epognen eventually at 7 months
into Tx and that helped somewhat. At 10 months into TX I developed
pneumonia, and followed that up with a nasty MRSA infection on my left
hip. It was not one of the Happier times of my life :)
Even more curious, within two weeks of ending TX, the cough had
magically disappeared. Just up and went away. It ended. But they still
insisted it was not related to TX. Go figure. Started within a couple
of weeks of beginning TX, went away within a couple of week of ending
Tx. Am I sceptical? You betcha!!
But I now have a diagnosis of COPD on my record as well. Boy am I a
classic Health Risk or what? I hate medical questionaires!!
In my case the Good News is that I came out the Other Side Virus
Free.... yes at one point, my BLCD also called and said "stop taking
all meds until I can see you again" - I had the same kind of reaction
that was like, jeez I'm having really good results, great EVR, even if
its almost killing me - haha! - and you tell me to stop taking the
"cure"?? I think I stopped for maybe two days, then just cut the Riba
in half maybe for the next few days until I could get together with my
doc, and he prescribed the Epogen, which did seem to make a
difference.
Yes, I was on anti-Ds and had pretty much been for many years on and
off. I can't really relate to the whole "psychological side effects"
part, never really related to all the Riba Rage talk I've heard so
much about, but in my case, I think I just bascially crawled inside
myself and tried to sleep my way thru it! :)
I do hope things work out for you and maybe the next generation drugs
will be more User Friendly for you. Until then it is, indeed One Day
at at Time and WTF!
Best, ~ Deb
Marco Sax
thank you dBo for your message
Very gasping breathing here, although no cough, though.
And the breathing difficulties were more like an asthma fit, gasping for
air, ending up hyperventilating
I had the symptoms of hemolytic anemia, but just the symptoms, as blood
tests showed HGB at 12 (so no need to take hormones to help red blood
cells) and also blood oxigenation was 100%
So it was all in the head (or, as he put it , down to the central
nervous system)
> Even more curious, within two weeks of ending TX, the cough had
> magically disappeared. Just up and went away. It ended. But they still
> insisted it was not related to TX. Go figure. Started within a couple
> of weeks of beginning TX, went away within a couple of week of ending
> Tx. Am I sceptical? You betcha!!
I am too!
> In my case the Good News is that I came out the Other Side Virus
> Free.... yes at one point, my BLCD also called and said "stop taking
> all meds until I can see you again" - I had the same kind of reaction
> that was like, jeez I'm having really good results, great EVR, even if
> its almost killing me - haha! - and you tell me to stop taking the
> "cure"?? I think I stopped for maybe two days, then just cut the Riba
> in half maybe for the next few days until I could get together with my
> doc, and he prescribed the Epogen, which did seem to make a
> difference.
>
Once he examined me, carrying on with tx was out of the questions, he
said: not a single day more!
I was risking neurological damages, he said
Shering Plough (for how much I mistrust farmaceutical companies)
endorsed this
> Yes, I was on anti-Ds and had pretty much been for many years on and
> off. I can't really relate to the whole "psychological side effects"
> part, never really related to all the Riba Rage talk I've heard so
> much about, but in my case, I think I just bascially crawled inside
> myself and tried to sleep my way thru it! :)
>
> I do hope things work out for you and maybe the next generation drugs
> will be more User Friendly for you. Until then it is, indeed One Day
> at at Time and WTF!
absolutely!
I am so happy it worked for you, coming out virus free...
in the end, each one of us is one of a kind!
>
> Best, ~ Deb
--
ciao
Marco Sax
Jane
Hi, Deb-
I just completed TX in October (thankfully as a responder). I also
developed a cough durring tx for no apparrant reason. Mysteriously,
the cough has dissapeared since the recent completion of TX. I had
not heard anyone else mention a cough or lung issues as a side effect
and when I asked my Dr about it, I was assured that it had nothing to
do with TX. Having experienced it myself, and now being cough free
again, I am convinced that it had everything to do with tx.
Very interesting!!!
Waterspider
"Jane" <angies...@yahoo.com> wrote in message
news:614f6353-2f17-4cb6...@k4g2000yqb.googlegroups.com...
Hi, Deb-
Congratulations on your success, Jane!
There were a number of people here who went through treatment the same time
as I did, a few years back. Just about all of us had a dry, irritating
cough, and it was documented on several fairly legitimate websites as a
recognized side-effect of treatment. In all cases, I believe, it resolved
after completion of treatment.
Perhaps Marco and others here today are talking about a different type of
cough? This gives the "professionals" the benefit of the doubt, but it
really seems like too much of a coincidence.
Waterspider
> Waterspider <nos...@all.com> wrote:
>
>> Hello from another stranger, this one in Canada.
>>
>
> Hi there!
>
>> Sorry to hear that your treatment was cut short, and hopefully you'll be
>> able to give it another go before long.
>
> That doesn't seem the case, given the sides I suffered
> Shering Plough, alerted by my gastro, were very surprised by my sides,
> especially because they got so severe and worsened very rapidly during
> the third week of treatment (in a matter of two thre days, really: going
> from quite manageable to the symptoms of a terminally ill person ).
> They said my gastro was right in stopping the tx right away
>
>> Psychological side-effects of peg-interferon/ribavirin are common and can
>> be
>> severe. I'm wondering if you were taking antidepressants while on
>> treatment.
>
> No. Never had a history of anxiety o depression, even slightly
> Never taken any in my whole life
>
depression or other mental illness. This is well documented, and suicide is
listed as a possible risk. Yes, that's an extreme case, but it gives you an
indication that treatment-induced depression is not to be pooh-poohed.
Marco Sax
I agree.
What I'm saying is that , not having had any anxiety or depression
history, and having waited almost a year (while i was always under
control and taking blood samples) in order to shedule treatment once i
had taken care of most of this year's stressful tasks and i was in
relatively calm period, having delegated all of my duties to my
associates, it didn't seem necessary I had to take this particular
precaution.
Also, I want to stress once more, my breathing sides effects came out
all of a sudden, during two/three days time in my third week of tx.
Until then i was relatively fine (usual flu-symptoms, fever after shots,
joints and bone aching, etc)
Also, my severe sides were regarding gasping breathing, like those
caused by hemolitic anemia, but my blood test showed my HGB was fine
--
ciao
Marco Sax
Cactus Jammies
"Marco Sax" <saxa...@gmail.com> wrote
waterspider wrote:
>> Doesn't matter. The meds cause depression, regardless of any history of
>> depression or other mental illness. This is well documented, and suicide
>> is
>> listed as a possible risk. Yes, that's an extreme case, but it gives you
>> an
>> indication that treatment-induced depression is not to be pooh-poohed.
Marco Sax replied
> I agree.
> What I'm saying is that , not having had any anxiety or depression
> history, and having waited almost a year (while i was always under
> control and taking blood samples) in order to shedule treatment once i
> had taken care of most of this year's stressful tasks and i was in
> relatively calm period, having delegated all of my duties to my
> associates, it didn't seem necessary I had to take this particular
> precaution.
> Also, I want to stress once more, my breathing sides effects came out
> all of a sudden, during two/three days time in my third week of tx.
> Until then i was relatively fine (usual flu-symptoms, fever after shots,
> joints and bone aching, etc)
> Also, my severe sides were regarding gasping breathing, like those
> caused by hemolitic anemia, but my blood test showed my HGB was fine
> --
> ciao
> Marco Sax
Just for the record, I disagree with what Waterspider says about depression
being part of the tx side fx. Spontaneous crying does not mean you are
depressed. I think that people in general are far too self-indulgent and
physicians are far to ready to write scripts just to calm a patient, as the
rx itself may be benign. Crying is not necessarily an indication of
emotional stability, it MAY mean that the body is using any response it can
to try and rid itself of the insults to its integrity, ie: the meds.
Your worst side effect is the confusion you'll experience. Now that one is
generally experienced by all tx'ing patients. And the frustration and
acting out as a result... the riba rage.
never took downers
cactus jammies
Dwight
I don't know if it was riba rage or depression, but I went through a Dr.
Jekyll Mr. Hyde type of switching the second round of tx that I didn't
experience during my first. I seriously wanted to hurt someone for the
smallest of things while driving. Anti-d's did help considerably during
time, not once did I push a car over the side on an overpass and don't
know what stopped me. Maybe, deep down I remembered it was just wrong
and slightly improper. :)
Dwight (glad I didn't get a ticket like Dez and Elmo)
Cactus Jammies
"Dwight" <no...@yahoo.com> wrote
> I don't know if it was riba rage or depression, but I went through a Dr.
> Jekyll Mr. Hyde type of switching the second round of tx that I didn't
> experience during my first. I seriously wanted to hurt someone for the
> smallest of things while driving. Anti-d's did help considerably during
> time, not once did I push a car over the side on an overpass and don't
> know what stopped me. Maybe, deep down I remembered it was just wrong and
> slightly improper. :)
>
> Dwight (glad I didn't get a ticket like Dez and Elmo)
////////////////////////////////////
Dwight,
Way back some years ago I was prescribed Zyban to help me quit smoking.
It is a commonly used anti-depressant. I didn't like it very much because
it broke up my attention span. It was a b* to try and work while under the
influence. I think perhaps that is how it works... a patient cannot build
up any kind of fury or remorse about anything because the Zyban basically
shatters the window that you normally have in front of your consciousness.
If not shatter, seriously spider-web it so that you have to spend more time
looking through each individual shard hanging there rather than build up a
total 110 degree-wide viewpoint. Just a guess.
cheer
cactus jammies
Waterspider
"Cactus Jammies" <cactus...@retinalcircus.orb> wrote in message
news:oKFOm.53254$Db2.37064@edtnps83...
underway, researchers noticed that an unlikely high number of subjects
spontaneously quit smoking.
These things happen. Remember, lsd was being developed as a cure for the
common cold :-)
Dwight
From what I remember of friends of friends that tried lsd, they didn't
care about colds for eight hours or so. At least that is what I was told.
Dwight (I used that patch to quit smoking, both times) :)