New medical approaches to UC treatment
Scandinavian
Even doe HPI is the main topic for discussion I would assume it
wouldn't hurt to discuss also other novel approaches and experiences
from those. What comes to mind are:
1) Novel new 5ASA medication MEZAVANT (sold in the US as LIALDA),
clinical trials have indicated superiority over Asacol both for
induction of remission and also for the maintenance of remission
2) Otsuka's Adacolumn is for selective leukocyte apheresis with some
very impressive results with only 5 treatments certain patients are in
remission over 2 years
3) Remicade and other biological treatments
4) VSL#3 and other high potent probiotics
5) Vitamin E, D and other supplements
If any one has any experience from the above please post few words of
wisdom
Regards,
Burke Porter
Japan, about two years apart. Each time with a different kind of
filter. Both times my doctor suggested this treatment as I was trying
to taper off of steroids which usually put me back into a flare. The
first time I underwent 12 treatments, the second time, six. Both
times I was able to get to a reasonable level of remission, however,
it wasn't complete. The first time was about two years ago, and I
would say I was in decent shape for at least half a year, but back
then I wasn't really watching my diet, etc. The second time was just
in April right before I was preparing to fly down to Australia for the
HPI treatment. I was able to taper down off of steroids, but as you
may know if you've seen my other posts, I still had active distal
colitis that was discovered via scope in Australia. But I was feeling
good.
Basically, about an hour before my appointment time, I would put two
pieces of numbing tape on my left arm where they would be drawing and
re-inserting the blood. I would show up at the hospital at 10 in the
morning as an outpatient. There was a large room with many (probably
30) similar devices near hospital beds. There were many elderly
patients usually hooked up to the various devices. I think most of
them were there for kidney treatment.
The hospital staff would put two needles into my left arm in the large
veins near the elbow -- one to drain the blood and one to put it back
in. They would get the tubing taped down and secure, I would put on
my headphones, and I would watch my own personal, miniature TV for the
duration of the treatment (anywhere from one hour to an hour and a
half depending on my circulation for the day and how well they had put
the needles in). The staff would occasionally check my blood pressure
and monitor the computer hooked up to the device. The computer from
time to time would set off a small alarm if anything needed to be
adjusted.
Then, when I was finished, they would take the needle out that was
drawing the blood, hook it up to an IV until the remainder of my blood
still going through the device was back in. This took only about 10
minutes. They would take the other needle out, put a couple regular
bandages on my arm, and I would walk out of the hospital. I was
usually a little dizzy afterwards each time, nothing serious, and it
would subside within 10 or 15 minutes.
I would go to work, and often times be at the sports gym that same
evening. Occasionally, I would have very slight bruising and very
small needle marks on my arm. If I were in downtown LA, people may
have assumed the wrong thing... :)
Scandinavian
Adacolumn has received very good publicity and results mimic those
from corticosteroids without the side-effects. I guess it all depends
on what kind of filter they use to achieve individual results.
By the way has any one been tested for Fusobacterium varium? It seems
a group of Japanese doctors think Fusobacterium varium is the
pathogenic bacteria causing UC and have in clinical trials treated UC
patients with a combination of antibiotics (amoxicillin, tetracycline,
and metronidazole) probably the same way/idea as T.Borody treats
Crohns patients for MAP bacteria with antibiotics.
Burke hear anything about this in Japan? Results from this Japanese
study was presented at the DDW last month. Below an example
http://wwwsoc.nii.ac.jp/jbf/meeting/09-pdf/143-145ookusa.pdf
bporter
as another possible treatment. Since I had just done the HPI, though,
it wouldn't be the best idea to do an antibiotics course for a while.
We didn't talk about it very much, but I think I'm going to ask him
more about it at my next appointment.
Scandinavian
pathogens for UC could not be so far fetched. If true would not be
that different from how they started treating stomach/peptic ulcers
caused by H.Pylori with different spectrum antibiotics.
Burke if you have a chance to get some info next time you have the
time would be helpful. I actually got the idea that before me next HPI
I would prep my self with the suggested antibiotics for the
Fusobacterium varium in a way try a dual therapy, what is there to
loose.
regards,
bporter
bporter
the entire group.
First, let me apologize for not responding to some other posts where I
think I might have been directly addressed. I finished my job in
July, and with moving around, I have been in and out of email contact.
Second, an update on my situation: as most of you probably remember, I
underwent the HPI treatment in Sydney at the end of May. At that
time, I had active distil colitis (during the eight years since my
original diagnosis, at one time, my entire colon was in a flare). My
condition at the time of undergoing the treatment was not the most
conducive for achieving the "best" results, but we hoped for the best.
Currently, I still have slight bleeding from time to time, and some
days are great in terms of bm frequency, other days, it can be a
little rough. Seems to depend on what I eat. I am however completely
off of steroids for the first time in a long time. I think the
procedure definitely had positive results. I'm not sure if it will
get any better than this, but I hope it will.
In regards to your post, Scandinavian, I have been on Azathioprine
(also known as Imuran) in the past. The drug can take anywhere from a
month to six months to have an effect, from what I've read, and I was
on it for a total of probably eight months. It was hard to tell if I
ever received benefits from it because a couple of months after going
on it, I got a stomach infection which basically made all medicine I
was on at the time moot, and my symptoms were bad. Then during the
remaining months, I tried everything from Adacolumn to HPI, so as
symptoms improved, I didn't really know what to attribute it too.
I discontinued Imuran shortly after getting back from having the HPI
treatment. As it stands now, I am only taking Pentasa for treatment;
no other meds and no probiotics like VSL#3 which I have also used in
the past. But since I still have slight bleeding from time to time,
I'm considering starting Imuran again.
The other thing that I'm looking into trying is the three course
antibiotic treatment which I think you mentioned before. Of course,
I'm holding off on trying it for a while since it runs counteractive
to the HPI, and also I haven't been set up with a new doc since
moving. I probably won't get a new doc until the end of September.
Not sure what else to say except, if you've read about the medicine,
and you're comfortable with trying it, then what do you have to lose.
It's important to be on the right dosage because of the side effects.
In the beginning, I was on too high of a dosage (100mg/day), and I
felt nauseated every morning. That subsided after a month, and then
they eventually reduced my dosage to 50mg anyway.
Superman, you're going to Sydney in October for the HPI treatment
right? Hope all is well, and good luck with that.
Regards
(long post as usual)
On 8/27/07, Scandinavian <Scan...@gmail.com> wrote:
> Hi,
>
> I would like to ask those of our forum members who have used
> immunosuppressive agents on their experienced of these medications
> (e.g., azathioprine and/or mercaptopurine).
>
> I have now been on a 6 months stubborn flare and have a colonoscopy
> scheduled in 2 weeks. I intend to run a full bacterial analysis from
> the biopsies hoping to identify a bacterial pathogen (hopefully we
> find and isolate the sucker straight from the biopsies) + get all
> possible food allergies done.
>
> My doctor has now strongly recommended the use of a long term
> immunosuppressive approach claiming that based on his experience if
> there are no significant side-effects the results could be quite
> promising. He has also explained that those of his patients who are on
> azathioprine and refectory to all other UC medication (as I seem to
> be) are in excellent condition. His suggestion is the use of
> azathioprine for 2-3 years and if no UC occurs during that time the
> medication can be reduced and stopped, he has explained that after 2-3
> inflammation free years the chances for distal colitis returning are
> low. Traces of the medication should disappear with 3 - 6 months after
> stopping the intake.
>
> I am about to make some difficult choices and have great concerns
> regarding immunosuppressive treatment, however I also know that I
> cannot remain sick much further. Any advice/suggestions are very much
> welcome, I seem to be double time unlucky:
>
> 1) I got this freaking UC
> 2) I am totally refractory to all current and known UC medication, my
> UC laughs at the cortisone and spits at the 5ASA preparations + I
> drink VSL#3 like water everyday, how can I be that one person in 100
> 000??? Is it something I am totally missing here.
>
> Regards,
>
>
>
Scandinavian
My original post below:
> > Regards,- Piilota siteerattu teksti -
>
> - Näytä siteerattu teksti -
Jack
Let me give you advice out of my experience with HPI as it is very important the first 3 months to eat Fiber Fiber Fiber after HPI
This is also told by the clinic in Australia but some are healed within 1 month while others like me have to feed the new little bugs inside of us for a very long time.
It really will improve quicker with good fiber.