Collaborative Research Network Results 
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 Collaborative Research Network Results

May 10, 2004

  At a press conference this morning at the AUA Annual Meeting in San
Francisco Dr. Richard Alexander summed up the results of the clinical
trials done by the eleven research centers in the CPCRN (Chronic
Prostatitis Collaborative Research Network)

 They compared the two most commonly used treatments against a placebo.
They found neither Ciprofloxin or Tamsulosin reduced substantially the
symptoms of CP/CPPS after six weeks of therapy in men with moderate to
severe symptoms of long duration and with many previous treatments.



Mon, 30 Oct 2006 04:49:19 GMT
 Collaborative Research Network Results


Quote:
> May 10, 2004

>   At a press conference this morning at the AUA Annual Meeting in San
> Francisco Dr. Richard Alexander summed up the results of the clinical
> trials done by the eleven research centers in the CPCRN (Chronic
> Prostatitis Collaborative Research Network)

>  They compared the two most commonly used treatments against a placebo.
> They found neither Ciprofloxin or Tamsulosin reduced substantially the
> symptoms of CP/CPPS after six weeks of therapy in men with moderate to
> severe symptoms of long duration and with many previous treatments.

That's great, but.......

Nickel produced a similar study regarding this last year. No offence, but I
thought we already knew that Ciprofloxin and Flomax don't help much?

Well, at least now this issue has once and for all been settled, right?

I swear, if someone produces another study at next years AUA Annual Meeting
involving Cipro and Flomax, I think I'll faint.

Who wants to bet we'll be seeing the same research results 5 years from now?
Any taker's?
--






Mon, 30 Oct 2006 10:18:03 GMT
 Collaborative Research Network Results
On Thu, 13 May 2004 02:18:03 GMT, "o-- Idea Man --o"

Quote:


>> May 10, 2004

>>   At a press conference this morning at the AUA Annual Meeting in San
>> Francisco Dr. Richard Alexander summed up the results of the clinical
>> trials done by the eleven research centers in the CPCRN (Chronic
>> Prostatitis Collaborative Research Network)

>>  They compared the two most commonly used treatments against a placebo.
>> They found neither Ciprofloxin or Tamsulosin reduced substantially the
>> symptoms of CP/CPPS after six weeks of therapy in men with moderate to
>> severe symptoms of long duration and with many previous treatments.

>That's great, but.......

>Nickel produced a similar study regarding this last year. No offence, but I
>thought we already knew that Ciprofloxin and Flomax don't help much?

>Well, at least now this issue has once and for all been settled, right?

Not really... I'd still be taking Cipro if it weren't for the long
term harmful side effect.
It was great in reducing all the symptoms.
Many find that not only does it stop the growth of most bacteria in
the prostate it also for some reason has some anti-inflammitory
actions thereby reducing pain. Much better than most nsaids in fact.

- Show quoted text -

Quote:

>I swear, if someone produces another study at next years AUA Annual Meeting
>involving Cipro and Flomax, I think I'll faint.

>Who wants to bet we'll be seeing the same research results 5 years from now?
>Any taker's?



Mon, 30 Oct 2006 13:07:07 GMT
 Collaborative Research Network Results

Quote:

> >Nickel produced a similar study regarding this last year. No offence, but I
> >thought we already knew that Ciprofloxin and Flomax don't help much?

> >Well, at least now this issue has once and for all been settled, right?

> Not really... I'd still be taking Cipro if it weren't for the long
> term harmful side effect.
> It was great in reducing all the symptoms.
> Many find that not only does it stop the growth of most bacteria in
> the prostate it also for some reason has some anti-inflammitory
> actions thereby reducing pain. Much better than most nsaids in fact.

> >I swear, if someone produces another study at next years AUA Annual Meeting
> >involving Cipro and Flomax, I think I'll faint.

> >Who wants to bet we'll be seeing the same research results 5 years from now?
> >Any taker's?

I think you have your studies and facts a little jumbled. Nickel has
published studies showing beneficial effects of quinolones (Levaquin)
and alpha blockers (Flomax, alfusosin) but in different CPPS
populations. The NIH study involved patients with symptoms of long
duration who were heavily pretreated (it's in the abstract). The point
of this study is that patients who have tried and failed these {*filter*}
in the past should not be treated with more of the same. The other
point is that 6 weeks for an alpha blocker is probably too short (the
Flomax and alfusosin studies that showed benefit were done for 3
months).


Mon, 30 Oct 2006 21:22:38 GMT
 Collaborative Research Network Results

Quote:
> Nickel has published studies showing
> beneficial effects of quinolones (Levaquin)

Actually he said Levaquin is no better statistically than placebo.

--
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Tue, 31 Oct 2006 01:25:47 GMT
 Collaborative Research Network Results

Quote:
"Mr. Pubmed"  wrote....
> I think you have your studies and facts a little jumbled.

My bad.

I should have probably been more specific.

I assumed reader's would know that I was comparing the recent study from the
2004 AUA Annual Meeting in San Francisco which declared that neither
Ciprofloxin nor Flomax reduced substantially the symptoms of CP/CPPS after 6
weeks of use, with the Nickel Levofloxacin multicenter trial which declared
that 6 weeks of Levofloxacin therapy was no better statistically than
placebo. The Webmaster at c.p.com is correct.

Quote:
> The NIH study involved patients with symptoms of long
> duration who were heavily pretreated (it's in the abstract). The point
> of this study is that patients who have tried and failed these {*filter*}
> in the past should not be treated with more of the same.

We all agree with the above, I just hoped CPPS research was beyond trying to
prove the fact that patients who have tried and failed these {*filter*} in the
past should not be treated with more of the same. We needed thousands of
valuable research $$ spent on reiterating this point?

Quote:
> The other point is that 6 weeks for an alpha blocker is probably too short
(the
> Flomax and alfusosin studies that showed benefit were done for 3
> months).

Actually, this finding is interesting as most men try flomax for a month and
if it doesn't help they toss it. I suppose not all was lost.

Ok, here's my rant:

I just don't think another study reporting the inneffectiveness of flomax
and/or ciprofloxacin, levafloxacin, whocaresoxacin, or any one of the other
fluoroquinolones is helping men who suffer from chronic pelvic pain
syndrome. It just isn't. By the way, all anyone had to do was ask. I think I
speak for a lot of people when I say that one less study involving these
medicines the better. I mean, who really cares? We know they don't work
well. Why not a multicenter trial telling us why ciprofloxacin was taken in
the first place and how the pathogen responded to the drug? Do a study
showing regrowth of the microorganism, if it mutated, or where it
congregated after regrowth. I don't know, ( pulling out my hair ). ~~~
Please, no more flomax - cipro studies ~~~

End of rant.

p.s. and no offence to anyone in particular.

Adios.
--






Tue, 31 Oct 2006 12:22:10 GMT
 Collaborative Research Network Results

Quote:
> We all agree with the above, I just hoped CPPS research was beyond trying to
> prove the fact that patients who have tried and failed these {*filter*} in the
> past should not be treated with more of the same. We needed thousands of
> valuable research $$ spent on reiterating this point?

When a patient with CPPS for 10 years who has tried the usual
treatments goes to see a new uro, what treatment does he get most
often? Number1 is Cipro and number 2 is an alpha blocker. That is
standard practice. That is why this negative study is so valuable. It
might actually change practice patterns.


Tue, 31 Oct 2006 18:39:38 GMT
 Collaborative Research Network Results
It is only valuable if it results in any treatment that actually demonstrates improvement tot he patients.
To remove treatments option and replace them with NONE that are accessible to most people is likely to have a
devastiting impact on the pschology of the patient.

For example - I know there are a lot of proponents of physio-therapy out there - but try and find one in your
town, county or state that you can drive to for regular treatments - its virtually impossible for the vast
majority of sufferers who are not able to take weeks off of work at a time and travel and staty out of town -
that is out of reach for most patients. I would have tried it if it were available within a 3 -5 hour drive.
And I live in a metropolitan area in upstate NY - but traveling to NYC is too far - too expensive - and not
practicle for more then an occasional one day visit.

In summary - there needs to be treatment options and protocols offered by the medical community that "may" work
for some - and they need to be "pushed".  For example - Shoskes is trying WIT with some success - this should
be pushed as a possible experimental treatment by many Uros - and I am sure many patients would volunteer to be
Guinnea Pigs for it to prove its effectivness/ineffectiveness.

My own case - I pushed like hell to get injections - they work great for me - yet every week I get emails from
sufferer who can not get a Uro to do them for them - even if it only works in 20% of the patients - it is
something to try to give the desperate a chance at relief.

I am frustrated that the medical community does not see our population as deserving treeatments - even
trial/experimantal ones - in the same light that they do cancer - while its true prostatitis may not kill you -
there are times when I think we all could agree we wish it would!  It can be very debilitating and is routinly
ignored.  Not acceptable - and I am fortunate enough to have a found a Uro to work with for me - many others
can not.

Quote:


> > We all agree with the above, I just hoped CPPS research was beyond trying to
> > prove the fact that patients who have tried and failed these {*filter*} in the
> > past should not be treated with more of the same. We needed thousands of
> > valuable research $$ spent on reiterating this point?

> When a patient with CPPS for 10 years who has tried the usual
> treatments goes to see a new uro, what treatment does he get most
> often? Number1 is Cipro and number 2 is an alpha blocker. That is
> standard practice. That is why this negative study is so valuable. It
> might actually change practice patterns.



Tue, 31 Oct 2006 22:04:46 GMT
 Collaborative Research Network Results


Quote:
> When a patient with CPPS for 10 years who has tried the usual
> treatments goes to see a new uro, what treatment does he get most
> often?

I don't know, but I think if urologists started passing out gifts and toys
like when seeing the dentist, patient's would be a lot more sedated and less
dissapointed after their appointments.

Quote:
> Number 1 is Cipro and number 2 is an alpha blocker. That is standard

practice.

Yes, and for way too many years has it been that way.

Quote:
> That is why this negative study is so valuable. It
> might actually change practice patterns.

I concede that's a good point, but I didn't view it that way because I'm not
sure how optimistic I am about it actually having a significant impact on
standard practice. If the study is construed by the urological community in
the manner you lay out then it's of value. If it changes practice patterns
by making general urologists try something different then it's of value.

I don't actually think antibiotics and flomax should be ignored as they have
a role to play, especially antibiotics in certain situations. I just feel
re-emphasizing the same point over and over in research studies is
detrimental to improving people's lives.

Good points as always, Pub.
--






Wed, 01 Nov 2006 00:11:15 GMT
 Collaborative Research Network Results


Quote:

> > Nickel has published studies showing
> > beneficial effects of quinolones (Levaquin)

> Actually he said Levaquin is no better statistically than placebo.

Regarding this study or that, I think it depends on what year his research
came out when we have this discussion too. As Pubmed wrote Nickel has
published studies showing the beneficial effects of antibiotics, but from
what I can tell most of these were between 1992 and 2000. These were studies
showing the benefits of antibiotics and the negative impact pathogenic
microorganisms had on the genitoury tract. On the other hand, and as the
Webmaster at c.p.com wrote, Nickel has more recently written that
antibiotics like Levaquin are no better statistically than placebo and he
might even be leaning towards the ideology that the same bacteria are
associated with both symptomatic and asymptomatic men. Don't quote me on all
this, but these studies seem to be coming out between the years 2001-2004. I
don't know if his new research cancels out the old or what? But, from my
viewpoint, I found his work between 1992-2000 much more fascinating and
potentially helpful. Lot's of people like his newer stuff. Some will say the
change is is just a natural progression of science learning. Others will say
the change was influenced by where the research money came from. All I say
is no more regurgitated studies telling us what we should already know.
--






Wed, 01 Nov 2006 02:56:38 GMT
 Collaborative Research Network Results
I am responding to ideas posted throughout the thread overall, and I
must say that this has been one of the most impressive to post here in
what seems quite a while.  I wasn't aware of any specific year that
there was a great crossroads or turnaround in strategies, but even if
there was, how stubbornly is necessary change in research and
treatment protocols is going to be and has been resisted by many
doctors and even in major medical centers and since the time I became
ill with this, which was late 2000.

One other minor detail to address here is that I wasn't aware that
there were
CPCRN centers until just reading this, but heard through the grapevine
about
a doctor in Jackson, Mississippi who, after checking webpages, seems
to be near retirement.

I just made my first trip out of town to see one of the doctors either
in
the CPCRN network or close to it and was impressed with the attitude I
see
those doctors who participate in it have, in regards to this illness.
Take for instance this newsgroup, in which (and about which I have
complained repeatedly) is constantly a debate between those people who
throw all their
eggs in the antibiotics/massage basket and those others who adamantly
insist
that this disease is not infectious in etiology at all.  And I also
think back
about how long it has taken me to jump ship from one to almost the
other side
altogether, if not quite.  

Early in 2002, I remember telling my doctor, who believed in
antibiotics and massage primarily, that I was no longer expecting a
cure from this by constantly throwing antibiotics at it, and before
dropping me at the end of April that year, he would more or less shrug
his shoulders as if to say that he didn't know or that perhaps I was
being arrogant.  He did insist on slow growth sensitivity lab results,
and once he dropped me, I was quite uncertain I would
ever get so careful treatment again.  The costs of having this done
with him,
however, seemed rather nominal in comparison with what the Baylor
specialists here would charge, and who had me completely terrified
that either I had to be put on intravaneous antibiotics or as a
greater copout, that if I was still having issues with pain with this
and there was nothing to really treat it, that the problem was one
that is in my head.  The doctor I saw out of town just very recently
emphatically stated to me without my asking him, that the problem
wasn't something in my head.  

For the second half of 2002 and all the way up until now, I have been
going out to a doctor rather hard to get to transportation wise, and
who would just as likely throw the specimen over his left shoulder as
turn it in for five to seven day slow growth exams, or pardon me, more
likely ...  I was somehow
very cynically or fatalistically or some of both be able to laugh
about this very fact.   Just to show what a dependency can develop or
in my case, had developed (and whose fault mostly? - the Baylor
specialists in one of the largest medical centers in the world), I
decided to go cold turkey with the antibiotics (my third course of
bactrim had me feeling almost completely well most of this time)
around Thanksgiving 2002 and went to three more urologists for second
opinion, hoping to get the slow growth results I still thought I
needed, and had to almost by force (the threat of acute prostatitis
coming on) get back on antibiotics or in fact, the bactrim, after my
'results' with the third alternate urologist (and the first one among
them to do tests - two day) I had seen told me that I needed Cipro or
Levaquin, which I knew by then I had completely worn out, or my MRSA,
VRSA pathogens (if they had developed quite that far) had learned to
resist by then.

Phew!  This narrative seems long, but probably not so long compared to
some other stuff I posted here back in 2001 and 2002.  After a several
month course of Bactrim that worked weakly during the first months of
2003, I was put on
amitriptyline (and now accompanied by the strong alpha blocker
doxasosin, which in a way may make hytrin look first generation by
comparison, but don't take my word for it - I am not a doctor) and
nervously stopped the antibiotics, fearing
I'd have to be put on them again in 2 or 3 months with still less
certain results.   Here it is May 15th and I'm three weeks away from
having been off for a year.  The out of town guy I saw, and who I have
sworn to confidence on this (I trust him without asking), sent my
doctor in Houston, who I have made fun of above a bit but who has been
fully supportive of my decision to turn myself in to the CPCRN, a
congratulatory letter on how well my case has been
managed so far, and 'for a number of years by now.'  We both shared a
really good laugh over that and moreover, over 'how challenging my
case has been so far.'  'He just does not know how challenging it has
been.'  At a Kerry rally I attended here a few weeks ago at the
University of Houston, I shared with Sheila Jackson Lee in just a few
phrases (to allow for space to also briefly lay in on the Bush - Ariel
Sharon relationship) where I had been, and she was appreciative.  A
long way from having seriously considered taking Amtrak out to Tucson
to see Polacheck in 2001 - a consideration I dropped after several
days.

Someone had posted here already in this thread that without
antibiotics, he can not depend on 'just nothing', which all the
chinese herbs, saw palmetto, quercetin, etc, had amounted to for me
thus far.  Whatever the double blind exams have said, and given what
autoimmune and neurological characteristics that this condition can
manifest, one can not alienate those professionals altogether who at
least nominally have to rely on antibiotics for consolation of their
patients.   Problem is, with these professionals, they are relying on
a level of research that had already been available in the early
1960's, around the time I was born and perhaps until the past several
years, we haven't been
really updated very much.  Antibiotics still need to be there, as to
testimonies with acute prostatitis attest, but absolutely as a last
result, and with alternative therapies as numerous as we can put
together, test, and administer to patients.   The amitriptyline I take
(and never was prescribed to me for depression) was discovered by my
urologist perfectly on the sly, as he
had another patient with serious emotional symptoms, and the same
medication had
started treating for this had started responding physically to it for
our doctor's satisfaction.  He had also read up on it, of course, from
medical reports avaiable.

I 'accidentally' included in with a medical records fax to the doctor
I saw, a xerox of opera tickets, and by way of response, right after
he had walked in, he explained to the nurse practitioner Leporello's
Catalogue Aria and did a perfect Leporello. There would be hope for
him, for whenever he may want out himself, God forbid.

Quote:
> I concede that's a good point, but I didn't view it that way because I'm not
> sure how optimistic I am about it actually having a significant impact on
> standard practice. If the study is construed by the urological community in
> the manner you lay out then it's of value. If it changes practice patterns
> by making general urologists try something different then it's of value.

> I don't actually think antibiotics and flomax should be ignored as they have
> a role to play, especially antibiotics in certain situations. I just feel
> re-emphasizing the same point over and over in research studies is
> detrimental to improving people's lives.

> Good points as always, Pub.



Thu, 02 Nov 2006 02:45:01 GMT
 Collaborative Research Network Results


Quote:
> I am responding to ideas posted throughout the thread overall, and I
> must say that this has been one of the most impressive to post here in
> what seems quite a while.

Can someone translate for me what he said or at least the main thrust of his
opinion?


Thu, 02 Nov 2006 15:43:02 GMT
 Collaborative Research Network Results
On 5/14/04 5:39 AM, in article

Quote:



>> We all agree with the above, I just hoped CPPS research was beyond trying to
>> prove the fact that patients who have tried and failed these {*filter*} in the
>> past should not be treated with more of the same. We needed thousands of
>> valuable research $$ spent on reiterating this point?

> When a patient with CPPS for 10 years who has tried the usual
> treatments goes to see a new uro, what treatment does he get most
> often? Number1 is Cipro and number 2 is an alpha blocker. That is
> standard practice. That is why this negative study is so valuable. It
> might actually change practice patterns.

I thing you right on.  If we can make people think before go down the same
road again, because that is the only road they know, we have done some good.
I was at the AUA and this did generate a bit of talk.  The study does have
its problems, but all and all I think it was helpful.

I am still not above retreating people if they have never got a good full
course of treatment (6+ weeks) and if they have WBCs after a prostate
massage and have symptoms that could go along with the diagnosis.  After
that I think you need to find some type of bug to justify another treatment
with antibiotics.

The alpha blocker is a little less clear what to do with and a study that
seems to show that it does not help it a good thing.  I still like to use it
if people have some type of voiding complaint, but just how long to keep a
person on it is a matter of debate and I do not have a good answer to that
question.

ME



Fri, 15 Dec 2006 01:00:34 GMT
 Collaborative Research Network Results

Quote:
> I am still not above retreating people if they have never got a good full
> course of treatment (6+ weeks) and if they have WBCs after a prostate
> massage and have symptoms that could go along with the diagnosis.  After
> that I think you need to find some type of bug to justify another treatment
> with antibiotics.

Matt, I read about you here:
http://tinyurl.com/yvy9d

If you are interested in male pelvic pain, you may wish to read more at
http://www.chronicprostatitis.com and
http://www.chronicpelvicpain.us/

Fel free to join our board and add your comments!

--
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Fri, 15 Dec 2006 01:37:29 GMT
 
 [ 14 post ] 

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