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Ulcerative Colitis
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Posted 12/23/2011 4:01 PM (GMT 0)
I have used sulphasalazine and salofalk and I got the same side effects. Headaches, diarrhea, nausea, vomiting, abdominal cramps and loss of appetite. Now my doctor has switched me to Pentasa. Since they're part of the same drug class, won't I have the same side effects? It's the holidays and I don't want to get sick. For now I'm taking Betnesol retention enema. It's a steroid so I know I shouldn't rely on it long term but it's the only thing that seem to give me relief. I took it for the first time last night instead of the salofalk and all my symptoms disappeared.
Posted 12/23/2011 4:02 PM (GMT 0)
Originally I was taking the betnesol for about 2 months prior to the salofalk. Then I was switched to the salofalk suppository. I took that for about 4 days. I got really sick about day 2. Then I went back to Betnesol.
Posted 12/23/2011 4:44 PM (GMT 0)
I would think you would respond the same to pentasa. It may be worth trying but I don't know if you would want to risk it during the holidays with your history.
Posted 12/23/2011 4:48 PM (GMT 0)
I think I'll take Betnesol until all the holiday stuff is over and then I'll try the Pentasa. If that fails I can always go back onto Imuran. That seemed to work for me once upon a time ago. Had to stop it cause I got c.diff.
Posted 12/23/2011 6:20 PM (GMT 0)
I cannot take any of the 5 ASA's due to severe allergic reaction (similar to yours Baggravation)...first dose of 4 Asacol pills that I took, about an hour later I broke out in a full body rash, nausea, fever, aches, headache, cramps (already had D to begin with)...thought I was gonna die, it was awful.
Posted 12/23/2011 7:48 PM (GMT 0)
Oh my goodness D: sounds like me. my GI just called and switched me to Pentasa from Salofalk. I am terrified to try it but my family doctor said to give it a try and if I get similar side effects that I should get back onto betnesol. I think I'm gonna try to get through xmas and then give it a try. If this fails too then I think I'm gonna be done with 5 ASAs. With school starting up the first week of January, I need to find a solution quick!
Posted 12/23/2011 7:54 PM (GMT 0)
yes, I agree 5ASA meds shouldn't be taken by you since you're having obvious negative side effects.

For an oral med, you could try the Entocort...maybe very low dosage to start.

Curious what your Pentasa dosage daily is supposed to be...or are you meaning the Pentasa rectal?

a
Posted 12/23/2011 8:03 PM (GMT 0)
She switched me to Pentasa suppository. I haven't picked up my prescription yet so I'm not too sure of the mg dosage. I'm assuming to take one suppository per night. My GI did prescribe Entocort enema but that is also a steroid and I was told not to take that for too long. Also, I was unable to use that enema on my own. I found the bottle to be extremely difficult to squeeze. I couldn't get anything into my rectum. That's why my doctor switched me to Betnesol retention enema. I found that to be extremely easy to work with. Do you think I should call my GI and express my concern about Pentasa? My family doctor just called and told me to give it a try. He said that sometimes drugs in the same drug class has different adverse effects. Since I'm on xmas break now, I don't mind trying it out for a couple days to see what happens. Knowing my luck with 5-ASAs it probably wont do much but if it does work that would be great. Another problem is that it's so difficult to get in contact with GIs at this time.
Posted 12/24/2011 6:18 AM (GMT 0)
Here's where clarity of a specific product is important. Remember that Pentasa, Salofalk and Asacol all come in oral and rectal preparations...so please be clear.

The salofalk you used in the past..was it the retention enemas?
Are you on sulphasalizine oral still?

My guess is that you might just be undertreated rectally and that after using the enema, you're improving.

If you're using the sulphasalazine, (which has 5ASA and sulpha) with no side effects, I would suspect it's not necessarily the 5ASA.

OK, so for clarification (please state the specific forms of either oral, rectal, enema or suppository)..saves a lot of question asking and a lot of assuming.

I would say try the Pentasa supps..maybe use them in the morning and the steroid enemas at night.

Let us know how you do on them..

q
Posted 12/24/2011 6:32 AM (GMT 0)
OK. So for the Sulphasalazine I was taking pills. The Salofalk I was taking suppositories and the Pentasa I got is also a suppository. I have a few xmas parties to attend so I'm terrified to try the Pentasa as of now. I'm thinking of starting it in a few days. My symptoms got really bad really fast with the past 2 medications. I originally thought I was allergic to sulpha but seeing as I reacted similarly to Salofalk, it may just be the whole drug class. If Pentasa does not work either I'm almost certain that my GI will put me back on Imuran :(
Posted 12/24/2011 6:35 AM (GMT 0)
so, I'm taking Betnesol retention enema 2x a day hoping that it'll help me recover faster. I noticed blood when I wiped the other day and that brought back some horrible memories. My family doctor told me to use it once every night. It's xmas time and I'm desperate to become well enough to see my family for the next few days. I'm not putting my health in any serious danger by doing this am I? D:
Posted 12/24/2011 8:35 PM (GMT 0)
You're not....but you might get some steroid side effects and a rebound of symptoms afterward.

You've never tried the salofalk enemas?

Are you on Imuran at this point? when did you go off it?

I think a timeline of what you have been on and when you stopped the pred/imuran, when you started the sulphalazine, etc.

Why aren't you on just asacol? or have you been?

q
Posted 12/27/2011 3:44 AM (GMT 0)
I haven't tried Salofalk enemas. So pretty much when I got diagnosed with UC I was put on Prednisone Jan 2011. I was on that for WAYYYY too long. I want to say around 6 months. Then my GI tried Sulpha which didn't suit me. Then I went onto Imuran. I ended up getting c.diff so the doctors at the hospital stopped my Imuran cause it was interfering or something with the c.diff medication. I was on Imuran for August 2011 and then I got c.diff and I had it for several months so I was on ectocort enemas in the hospital for those months. Now my GI is trying these different 5-ASAs. So she gave me salofalk supp. and now she gave me pentasa supp. I haven't tried pentasa supp yet because I want to get through the holidays well so I'm just sticking with steroids for the week. My GI has never mentioned anything about Asasol. I think she's gonna have me try all the 5-ASAs and if none of them work she'll put me on Imuran again. If the Salofalk supp gave me horrible side effects wont the enemas do the same?
Posted 12/27/2011 6:47 AM (GMT 0)
Like I said, you might be having some of the symptoms because you're being under treated.

I think try the salofalk enemas....then if they make you worse, you'll know for sure.

You're still on the sulphasalazine...that in itself could be the problem.

You've never been on Asacol?

q
Posted 12/28/2011 8:15 AM (GMT 0)
Thanks Heather. I'm going to see my GI soon so I'm going to bring these things up. I've never been on Asacol and I'm not on Sulphasalazine anymore. I went off of it in July 2011. Now it's just betnesol retention enema and today I'm going to try Pentasa supp. for the first time. Hopefully things go well! :)
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