Crohn's Disease Forum » Treatment » anyone

09-11-2006, 02:42 PM   #1
CanadaCurt anyone

I was just recently diagnosed and perscribed anyone or has anyone taken this medication? Any side effects? Has is been effective? I'm taking both or and enema(so pleasant..LOL)
09-11-2006, 03:04 PM   #2
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Join Date: Jun 2006
Location: Halifax, NS, Canada

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Hey CanadaCurt

I'm taking Salofalk 4000 mg daily (4 times 2 500mg tablets).. I started on this over a year ago.. First time around it had little/no effect (nothing seemed to be working last year)... however, this time around, alone with dietary changes, I am noticing VAST improvement - most notably a lot less bleeding and a lot less pain - I still get pain, but it is nowhere near as bad)

Side effects - pain is more intense (but it seems to be getting better day by day) approx 60 - 90 minutes after I take my pills... could be the pills, or it may be that the pills anti-inflamatory effect allows more material to pass thru the ileum/colon. Dunno, doesn't matter - the pain abates, and like I said, it is way better than last year, and even better than the day before. got it?

OK, other side effect that I personally experience is headaches, severe ones. So severe I guess you could rightfully label them as migraine. However, these only occur after my last dose of the day (nighttime) AND I found on Dr Falk website that it's better to take the pills, drink plenty of water (2 glasses min)
then wait 1/2 hr - 60 minutes to eat a light snack, modest lunch, whatever..
NOT take immediately with food as recommended on the prescription. Dunno why there's a discrepancy, and I'm not sure why it's different..., I just know that this method works best for me... Very often I don't get headaches if I go this route.., and if I do, they're typically far less severe/dehabilitating. OK

Now, you might be totally different.. and this is the only medication that I am currently on.. I didn't know it was available as an enema (See, WE don't know it all here, so be careful, talk to your doctors, do what's best for you)
I was on a steroidal enema years before, steroids aren't nice, steroid enemas are the worst thing I've ever used, and I hope theres no confusion over what you are taking/being administered. know there are plenty of people on here who are taking one form or the other of 5-ASA (Salofalk being one of those) AND steroids... They might be able to give you a thumbnail sketch of what its like to mix 5-ASA (pentasa, mesalimine, salofalk, whatever) and steroids.

Hope this is helpful.. Just don't expect a miracle from medicine alone. you'll need to do your homework on diet, trigger foods, exercise, all of it to improve

Dx'd July, 2006
Meds: Flagyl, Cipro, Pred, AZA.. to no effect
Low Dose Naltrexone Nov 2007 - May 2014
Remicade June 17th, 2014
09-11-2006, 03:22 PM   #3
Thanks Kev! I appreciate the info! The enema's are Salofalk...don't make me feel that great though...only on for two weeks so we'll see!
09-12-2006, 08:51 AM   #4
hi Curt, I was on both the enemas and oral as well for years. it did nothing for me but make me feel worse. I took 8 pills a day at 500mg, and they seemed to just give me worse cramps and make me pee constantly. I found the enemas extremely painful, and couldnt even get half in before it would just come out on its own anyways, and the bleeding just seemed worse for trying. I tried a foam instead for a while, that wasnt as painful, and I managed to keep it in longer, but really saw no results from it. Im sure it works very well for some, but nothing seemed to help me at all anyways for about 2 years, so I cant blame salofalk.
I hope you get some good results from it. fingers crossed for you.
09-14-2006, 06:30 PM   #5
Senior Member
Join Date: Jun 2006
Location: Halifax, NS, Canada

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Came from clinic yesterday.. spoke with the NP there, told her about my side effects from the Salofalk... She suggested I try 3, 3 & 2 rather than2,2,2,&2
Will let you know how that goes... I can't recall the name of the steroid enemas I was on way back... but they caused me more pain than the disease
(but they slowly did the trick over 45 days at $10 a bottle)... as for Salofalk, I'm taking the same dosage as last year... but I also made dietary changes.. Whether it made a difference, I dunno. Just know that this combo is working for me.. Sure, I piss like a race horse, and I get arthritic like pain in my joints
plus occasional nite sweats (those may be the IBD).. Anyway, one persons success or failure with the drug REALLY shouldn't influence you... Try it, and combine it with all of the ideas/suggestions your medical support team offer, plus any on here that make good old fashioned horse sense, until you find the right combo for you...

Crohn's Disease Forum » Treatment » anyone
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