Mesalamine~ New and something seems wrong

[Sassenach]

Hi, dx’d in November but didn’t get started on mesalamine until February. I’m supposed to take 4 pills a day, and the first couple of days could only do two. Everything seemed fine. On the third day I choked down all 4, and before 24 hours set in I had severe cramps and diarrhea. I took three more days worth and couldn’t take it anymore. I called the doctors office the next morning and didn’t get a response from my gastro until the next day. He told me to keep taking it, by that time I was passing small amounts of blood. I have never passes blood before being dx’d. When he had the nurse call me back later that day, he’d said to keep taking it. I weighed myself out of curiosity and I’d lost 9lbs. I had to stop, I couldn’t function. I took two weeks off and now I’m back on it, but only at two pills a day. I’m supposed to see him at the end of April and although I know he’ll be mad I didn’t take them all, it was that or none at all. Is this normal for this med? I can’t imagine it is, and I felt my health and as further at risk by not being able to keep fluids.
He did tell me before I took this, if it doesn’t help he wanted to add a steroid (I’m sure you all know what it is, I don’t remember). I really dread seeing him again, because I feel like he isn’t listening. I decided on my own to switch up how I’m taking Thank you.

 

[LuckyD]

Sorry to hear this is happening to you. Maybe you are allergic to mesalamine? I've heard some people can be. Either way, your GI should listen to your concerns and try to find another medication that can work for you.

 

[Sassenach]

Thank you for answering. The severe cramps and diarrhea aren’t part of the medicine working? I know it says it takes 4 weeks notice any health improvement, wondering what those improvements are.

 

[LuckyD]

If the medication is working, your diarrhea and cramps should go away. How fast that happens can vary from individual and the severity of their disease.

I for one, never fully responded on mesalamine (Apriso) and prednisone alone during my initial diagnosis. I was on this for 4 weeks...saw very little improvement. I have UC (pancolitis). When this didn't work my GI added humira.

 

[Sassenach]

At the last visit, where he told me he was putting me on this, he said I had mild crohns and would probably always have just mild crohns.
I do wonder if he adds the steroid, that it would help it work better or make me even worse. I’m not going to stop the med, but I know I can’t take 4 pills.

 

[my little penguin]

5-asa (mesamalmine) are not recommended as a monotherapy anymore for crohns
Crohns affects the full thickness of the intestine
5-asa only treat the top layer like cream so the underlying layers are left to simmer inflammation

If you have inflammation present 5-asa can’t fix that
They need a steroid or een (exclusive enteral nutrition) to reduce the inflammation (some docs use Uceris ) once the inflammation is lower then

a maintenance med can keep the inflammation from creeping back up

most need methotrexate or imuran (immunosuppressants)

Ds was dx at age 7 with mild crohns
He was placed on Pentasa (similar mesamalmine)
He only got worse over the 30 days
Second opinion Gi couldn’t believe steriods or een weren’t given when Ds started Pentasa
Immediately started Ds in 6-mp ( duster drug to imuran )
At age 16 Ds is in Stelara plus methotrexate

please get a second opinion and try to find a doc who listens to you even if the doc doesn’t Agree with you

good luck

 

[teeny5]

I recommend a second opinion. My GI was not listening to me at first and I felt the meds were not working. I went to urgent care and saw an on call GI...he changed my meds that day. My GI wasn’t happy, but he has listened to me since.

 

[Malice67]

5-asa (mesamalmine) are not recommended as a monotherapy anymore for crohns
Crohns affects the full thickness of the intestine
5-asa only treat the top layer like cream so the underlying layers are left to simmer inflammation

If you have inflammation present 5-asa can’t fix that
They need a steroid or een (exclusive enteral nutrition) to reduce the inflammation (some docs use Uceris ) once the inflammation is lower then

a maintenance med can keep the inflammation from creeping back up

most need methotrexate or imuran (immunosuppressants)

Ds was dx at age 7 with mild crohns
He was placed on Pentasa (similar mesamalmine)
He only got worse over the 30 days
Second opinion Gi couldn’t believe steriods or een weren’t given when Ds started Pentasa
Immediately started Ds in 6-mp ( duster drug to imuran )
At age 16 Ds is in Stelara plus methotrexate

please get a second opinion and try to find a doc who listens to you even if the doc doesn’t Agree with you

good luck

Was on Pentasa for about three years. Had very few symptoms other than anemia (for which I get iron infusions a couple times a year) so I got complacent and quit taking the Pentasa when I accidentally ran out. Yep - now I am having flares. Have appointment Monday with GI and hoping to get back on Pentasa... if I understand what you are saying, I probably ought to ask about a second layer med like a steroid - at least in the beginning while still inflamed... but once better a less potent second layer medication would be ok. Am I understanding you correctly? I would have to look for alternative to steroids as I have a 'steroid induced' cataract, but at least the concept of a secondary med ought to be worth asking about, right?

 

[my little penguin]

The meds are in tiers
5-asa such a Pentasa are great for UC since only the top layer of the intestine is affected
Not so much for crohns since it leaves inflammation to fester under that top layer
Second tier is immunosuppressants such as methotrexate or Imuran these can be used as monotherapy and do not need a second medicine most of the time
Highest tier is biologics. Such as remicade /humira /Stelara
Again these can be used alone

when crohns is under control most patients are no longer anemic since the inflammation is gone

Steroids are not long term therapy and only used as a rescue med while waiting for the maintenance meds to kick in

when was your last scope or imaging ??

 

[Malice67]

I am due for another colonoscopy -- I haven't had a one in about 4-5 years, but have had several endoscopies -- I also have GAVE (otherwise known as watermelon stomach) which may be what causes the anemia, but the two cauterization treatments Iwere expected to have taken care of that as a source of anemea for another 5-10 years. So the two disorders make it more difficult to figure out which is caused by which....