Is Pentasa causing me more pain?

[natbtc]

Hi, I got diagnosed with Crohn's disease approximately 3 and a half years ago after it emerged after taking the contraceptive pill.

I was given steroids and pentasa and this took away the pain away and when my course of steroids was done everything seemed to be back to normal (kept taking the Pentasa).

I then got pregnant with my little boy approx 2 and a half years ago and stopped taking all medication as I didn;t want to harm him in any way, even though the Doctor said Pentasa should be fine.

I have Crohn's pains every day but not to a massive extent, I started taking my Pentasa again last week however and the pain has come back doubley.

Is this because I've been off it for so long and my body's not used to it? I would like the pain to go away entirely and was hoping reintroducing Pentasa would help but it's made things a lot worse.

I don't want to stop taking it again in case there are ulcers starting to build up because I'm not taking it!

Has anyone else experienced this with Pentasa? Any advice would be appreciated.

Thanks

 

[David]

Hi natbtc. Approximately 3% of the time, people taking mesalamine (the active ingredient in Pentasa) will experience a worsening of symptoms and need to stop the medication. However, I don't believe that's what is going on with you since you did fine with it initally. I would strongly suggest you go through the steps necessary to see your consultant and have the state of your disease reevaluated. I have a feeling that is has worsened and it's probably time for something stronger than Pentasa

 

[FrancisK7]

Nat,

When I started taking Pentasa, I had extreme headaches and my pain did worsen. These are symptoms of rejection, ie. you're allergic like I am.

You should call your GI specialist as soon as you are able to let him know. You will have to get the tests to start Imuran. The results take a month to come in, and if you are allergic Pentasa Imuran is next in line.

In the mean time and until the tests clear you for Imuran, your doctor will probably suggest another course of steroids to address the current flare.

You should stop taking the Pentasa immediately until you have spoken to your doctor.

 

[Kev]

I initially suffered severe headaches with 5-ASA. Upon advice from a GI clinic doctor, I changed from taking 1G 4 times a day to 1.5, 1.5 and 1G. The headaches only hit me in the evenings... when there was no food in my system. Doctors and pharmacists told me to take with food, but the drug company website recommended eating, waiting 1 hour, then taking dosage. Those changes permanently resolved the killer headaches, although I'd still periodically get some very annoying headaches.

But, occasionally, I noticed my pain levels would spike after taking my pills, and with no rhyme or reason. Doctors couldn't come up with an answer, but recommended that I keep taking it. I 'speculate' that these spikes in pain levels were actually due to the waxing/waning of my disease AND the fact that 5-ASA isn't a pain reliever per se, but an anti-inflammatory. So, if my disease ramped up, caused more inflammation, the pills would affect more area. Inflamed area. It's a crude comparison, but picture putting topical cream on a fresh sunburn. Hurts like Hades at first. That is what I 'think' was going on with me. Haven't a shred of hard evidence or medical training to back up my hypothesis. I wonder if your little vacation from 5-ASA has resulted in an increase in the amount of inflamed area the 5-ASA has to play with, and as such, your pain levels are up?

Now me, I came off my 4G of 5-ASA cold turkey, and my condition has not taken a turn for the worse. In fact, I no longer deal with the daily heartburn it apparently gave me. No headaches at all, killer or otherwise. And the cramping of legs/feet at night that I attributed to work, age, etc., have gone. And my urine is no longer the same color as the pills. I only hope that my pancreas will rebound to normal in the next 6 - 8 weeks, else I will be permanently diabetic. Not that there is conclusive proof the 5-ASA did that. But it is known to cause pancreatic issues in some folks.