• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Old/new..just looking for as much info as possible..

X

xrayzerase

Guest
old/new..just looking for as much info as possible..

trying to find out more on this new clinical trial...on interleukin-6?
has anyone heard of this?
i know -well-for me-it will likely be remicade/6mp/pentasa--but..just..looking at all sides of things..
my dr also mentioned humira (said it will probably be approved soon for crohn's)-so-not sure..it seems he is open to options though...
i know til i get my tests/results-he may not start the next meds (i am now on pentasa/entocort/aciphex--but am pretty certain rem and 6mp are next. (i have been reading more lately so am a little more caught up with others here on the benifits of rem if taken with 6mp or methotrexate...so..i guess that is why he mentioned both...
need to understand more about the differences between 6mp and meth. (maybe a clear-cut difference--but-i have yet to read on that just yet...
anyone who takes/has taken 6mp or meth with remicade..well..i guess i know the side effects-and possible long term troubles that can occur if taking these meds--but..i also can see why they work together --but-why do some people take just remicade? if taking both: is it because of the antibody thing-or also because it may work longer and/or better in conjunction with 6mp or whatever? i do get that maybe 6mp alone may help-so...maybe my dr will try that first...but-not sure if he will wait til i finish the 8 weeks of entocort-or-..(?) i still am hoping the pentasa does enough--but it looks doubtful.
it was good to read here about premeds (like benadryl and/or tylenol-and -whatever-before starting the rem infusion.
thanks for any help..(sorry if i screw up any info--just trying to learn as much as possible-as this is all seeming to happen so fast--(treatments etc)-
again-i love my dr--but i need to know what to ask him-and-also-if on these new meds-what extra supplements may help-and so on..
thanks..andrea
 
Last edited:
S

Skinsfan1229

Guest
I think one option for not taking both combined is treating fistulas with remicade...in that case you might not have a severe enough case to use something like 6mp along side...but I believe that they say if you get fistula's and abcesses that itss atleast moderate crohns.

How are you feeling? What hurts and makes you not feel good? How are you day by day going?

Have you tried prednisone instead of entecort? I know that its supposed to work the same but with less side effects, but the truth is a lot of people mainly use entecort when someone is already in remission or close. Prednisone is the bigger gun that could maybe get your disease under control, in which time you could switch back to entecort if needed.

Remicade only blocks Tumor necrosis factor cells, I believe they are the inflammation cells. Immuno-modulators suppress the whole immune system.

I've taken 6mp and methotrexate. The 6mp suppressed my bone marrow and I had to be isolated in the hospital, I cant even take it at a lower dose. Most people that have these type of reactions to 6mp, or the sister drug imuran CAN take methotrexate, I'm not quite sure why, but this is what I'm reading, and this is what I'm experiencing...The methotrexate is working alright, atleast my bloodwork is looking good.
 
X

xrayzerase

Guest
yeah..i read in your story about how 6mp suppressed your bone marrow.
i am just glad your bloodwork looks good now..and hopefully you are on a good track...
i feel fair. eating a little-drinking ensure-but still have bad heartburn/gas/and just feeling "off" (had another low grade temp lastnight)-but..bo "d" -only "regular" stools-so that is a good thing. but..the heartburn is really horrible-and is likely crohn's related-(i guess my crohn's is mild-moderate-the colonoscopy/biopsies showed the terminal ileum is just very inflamed-you know..lots of those (lymphocites?..not sure)-but not many ulcers and not too deep. but it is definitely crohn's-and inflamed(active?). i am getting the rest of my small bowel checked via that barium thing-and another upper gi (via barium this time)-and then maybe the pill-cam.
all i know is that no med works for the heartburn-ive tried so many (before i finally went for the scopes which dx'ed this)-i am on 2 aciphex now--nothing. i can deal with discomfort--i have been for years with this--but the heartburn is really -chronic-only lets up when i sleep and a few hours in the morning. i have no esophogus or upper gi ulcers-just mild gastritis-but..all i know is it may be worth risk with these meds if they will get rid of this. eating tends to make it worse too. my dr thinks its the inflammation in small bowel causing reflux--but..guess i need the test..not sure...
the adivan helps a little though..
just..not finding much on this heartburn-connection with crohn's--or..in the sense of -there are no upper gi ulcers-..so-it is frustrating not knowing what will help...it's likely the crohn's though.
he said i don't have the fistulizing crohn's--i am still unclear on this. is it a stage-thing (mild-moderate-severe) that is when one develops fistulas or narrowing-or is it possible to have moderate and not have fistulizing crohn's but the inflammatory thing. (wikipedia has been helpful with info-and some other stuff..but..it only goes so far...)
yuck..this can just be confusing.
on pred: well..that drug scares me the most..but..i guess if my dr mentions it..i'll be open..
as far as i can tell so far though--supplements are essential whether on or not on meds..so..it is good to be learning about how all this stuff relates-and which supplements are needed with which meds-and how all of them work together-or..fight each other..or..something like that...
sorry (been reading too much on this today..) :)
did you start the remicade yet?
personally-even if your dr sounds scary-it is good he is up on lots of really up-to-date stuff..
that is one thing i feel good about..i like my dr-he expalins things and shows me all the pictures on computer (biopsy slide image) and listens and hears my zillions of questions (even if i have little clue what he means when he answers) :)
 
S

Skinsfan1229

Guest
What other meds have you used besides aciphex, the other drugs like it, actually work in different ways, and are different types of drugs, its pretty interesting.

I def do not think its a stage thing. I think anyone can have anything happen.
 
GNC Crohn's Man

GNC Crohn's Man

Vita-Man
Taking 6mp or Imuran increases your chances of devooping various kinds of cancer. Remicade increases your chance of devolping lymphomia (a type of cancer). My doctor told me of to healthy young adult males my age 22 that were on Imuran and Remicade and developed lymphomia.. As a result I no longer take Imuran.

As far as Remicade or Humira take your pick. You do not do both. They both do the exact same thing. It's just if you become immune to one you can use the other since it has a different chemical compsition but the end results of using them, suppressing TNF-A (Tumor Neucrosis Factor Alpha) is the same.

Personally I had no problems with 100 mg Imuran as a maitaince med along with the Remicade... Granted that treatment didn't work by itself since I'm on the Remicade/Pentasa/Prednisone Taper again... Btw remicade treatments should be done every 8 weeks. And tell them to give you a benadrly and a tylenol before you start your treatment (this will help to prevent an allergic reaction). The remicade they use now is much "cleanier" than that they used years ago so their are very very few allergic reactions that happen during infusion now. Very much so if you take your benadryl and tylenol beforehand.

(Plus the bendryl makes you sleepy so you can just sleep through the 2-3 hour treatment)
 
GNC Crohn's Man

GNC Crohn's Man

Vita-Man
6mp

http://www.remedyfind.com/treatments/35/249/

http://www.skyweb.net/~mgbio/cd/cd.html

http://www.askapatient.com/viewrating.asp?drug=9053&name=PURINETHOL

Methotrexate

http://www.medscape.com/viewarticle/464546
Posted 11/25/2003

http://www.aafp.org/afp/20001201/tips/7.html
Posted 12/01/2000

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=7816064&dopt=Abstract
From FDA clinical trials in 1995


Imuran

http://www.skyweb.net/~mgbio/cd/cd.html


General

http://www.remedyfind.com/HealthConditions/35/
 
Last edited:
X

xrayzerase

Guest
Skinsfan1229 said:
I def do not think its a stage thing. I think anyone can have anything happen.
..
i think that makes sense (as if i know anything!)...just..there seems to be a few other things at play..(or..?)(oh..i have no idea! i am just starting to learn..so -really-just talking out loud as learning-and it is great to share info with others who both "live it" as well as what they have learned via reading/their dr/etc..)
as for the heartburn-only on aciphex (2x day) for it now--but-before i was dx'ed i tried prevacid/prilosec/nexium/zantac(?)/ and a couple others--none really worked (well-the prevacid helped for a very short time..but not for long)
i guess until i get the test results from that barium thing (to see if the crohn's is elsewhere-or if anything else is screwed up-i suppose i can't know much about why this heartburn is so bad (and why it tends to hit after noon or so--i am usually fine from like 630-12 or 2 pm.--and it isn't food-related..in that it hits despite eating or not)--and how it relates w the crohn's-(i know some with crohn's mention they take aciphex-but..there is not a ton of info on it..(heartburn and crohn's-) i know probably a lot of it has to do w the screwed up digestion (and reflux from that) but..hope to learn more that that about it.-and i am curious about "gas"-i know with crohn's and the meds-that gas is a problem--but-when there is a lot of gas inside-and some stomach pains-and--well-just-don't know enough about it all. and that ambien helps with the heartburn-so-nerves play a role..so..just interesting.
i'm curious--does your dr talk with you about a lot of whats going on with your crohn's-and-how you "do" w various meds? i know some dr's are really good with giving info and all..especially if they are really into a lot of the newer research-etc. i guess they only have so much time to explain things...but-still..i try to make a short outline of questions each time i go in in order to know which directions to look for info in on my own..
Click to expand...
 
X

xrayzerase

Guest
GNC Crohn's Man said:
That should give you enough reading material for now.... Time to do something else other than research meds now LOL....
Click to expand...
wow--excellent--
i dont have most of these...so-bookmarked and am about to read..
thanks :)
i got this book "pathologic basis of disease"--so-hopefully i can understand some of it and learn about what some things may "mean"-like-TNF-and various calciums/antibodies-and-stuff...need to try to know about how it all realtes to other things..(as best i can)--i suppose i am a bit obsessed with wanting to learn..but..better than wallowing in worry :) and..i admit--it is all interesting stuff..
anyway-thanks again for these links..
 
X

xrayzerase

Guest
GNC Crohn's Man said:
Taking 6mp or Imuran increases your chances of devooping various kinds of cancer. Remicade increases your chance of devolping lymphomia (a type of cancer). My doctor told me of to healthy young adult males my age 22 that were on Imuran and Remicade and developed lymphomia.. As a result I no longer take Imuran.
.
yeah-the risks are a bit scary--interesting that your dr mentioned the worry of lymphoma if taking the 2 together -(have the studies shown that these meds together tend to be more risky if you are male/young etc? i know i read something about the younger the disease hits one-that maybe more risks are involved...but..i also read that the degree of inflammation (and stage)-often doesn't play a role in whether one is more at risk for certain cancers or other problems from meds-or complications of the cd itself...so...it gets confusing. like-some people may have had cd earlyish-but not really bad-or flares--so never "knew"-or-maybe not? i guess since "cause" isn't known...i suppose when it "hits"-or -how much genetics play a role-and how it is all influenced by environmental stuff..but-not solely-(?)-
anyway-just..wondering why your dr took you off the one med-but--remicade also causes lymphoma--(maybe because the two make it much more risky?-or..i guess..just unsure--what makes a risk greater than a benifit?)
just was wondering if it was because the 2 didnt work well or because or the risk factor/s that he took you off the imuran (?) (how long were you on the two--before you went to rem/pent/pred)?
Click to expand...
 
S

Skinsfan1229

Guest
They actually held one of these clinical trials in my area, but most clinicals you can't participate in if you have an ostomy.
 
GNC Crohn's Man

GNC Crohn's Man

Vita-Man
I had been on remicade and imuran for about 2 years taking them together...

He just thought that until further study was done in the linking of the 2 drugs and the chances of it causing lymphomia was done that I should be off of it since cancer runs big time in my family... Granted I don't think anyone has ever had lymphomia but all the other cancers run on both sides of my family....

Very very very much so in the males of the family....
 
You must log in or register to reply here.
Top