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Who has had UC for over 25 years and never taken anything stronger than mesalamine?

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Posted 5/4/2022 9:29 AM (GMT -8)
Ok perhaps in europe it's different, but given that mesalazine is both cheaper and safer than biologics it is always the first line treatment in the countries I have lived in, unless your first flare lands you in a hospital, in which case you may need to go straight to "big guns".

I don't recall anyone saying "there is no point taking mesalamines since they will eventually fail anyway" but if they did that is pretty stupid as it is evidently not true.

Many UC patients don't need anything more than mesalamines. You don't see them on this forum because their disease is well managed.

What I do see is people on repeat courses of prednisone which is often very damaging and could be avoided if they went on a biologic.
Posted 5/4/2022 12:08 PM (GMT -8)
poopy: My boyfriend's doctor put him on Xeljanz just a few months after he was diagnosed. He no longer had ANY symptoms. His bloodwork still came back off and that's the only reason. I personally would have refused it. He was on mesalamine at the time, no idea the dose. Never tried or was offered rectal meds.
Posted 5/4/2022 12:11 PM (GMT -8)
Oh and also my GIs were fine with me being on only mesalamine for many years with manageable, pretty mild symptoms. They asked if I wanted to try imuran or Remicade. I said no. I never even was given steroids until about 5.5 years in. I'm totally against going right to the "big guns" myself. Other people can do what they want.
Posted 5/4/2022 1:43 PM (GMT -8)
I was on mesalazine only in the beginning then had a nonstop flare of about 3 years in which the first half was spent trying different doses of steroids and imuran. When i switched to biologics the difference was like night and day. Wish I'd been allowed to take them earlier, it would have alleviated a lot of suffering.

I just remember in the beginning everything was about being desperate not to take anything other than mesalazine. And that turned into being desperate to have my life back regardless of the medication.

Post Edited (poopydoop) : 5/4/2022 3:46:34 PM (GMT-6)

Posted 5/4/2022 6:00 PM (GMT -8)

Poopydoop said...
I don't recall anyone saying "there is no point taking mesalamines since they will eventually fail anyway" but if they did that is pretty stupid as it is evidently not true.

Many UC patients don't need anything more than mesalamines. You don't see them on this forum because their disease is well managed.

I agree, and for years the official AGA position was to use mesalamines first:
"Biologic agents and immunosuppressants are appropriate if patients have moderate-to-severe disease and have failed other standard therapies."

But that is changing.

iPoop said...
In adult outpatients with moderate-severe ulcerative colitis, the AGA suggests early use of biologic agents with or without immunomodulator therapy, rather than gradual step up after failure of 5-aminosalicylates...The top-down approach is gaining more strength in clinical practice.
https://www.healingwell.com/community/default.aspx?f=38&m=4181744

Post Edited (IamCurious) : 5/6/2022 8:00:20 AM (GMT-6)

Posted 5/10/2022 3:53 PM (GMT -8)
Reading though this thread because my doc and I are trying to decide if I can continue on mesalamine only or if it’s time to level up to, I believe he recommended, entyvio. Curious to those who take mesalamine only - are you symptom free and if so for how long at a time? I don’t think I’ve gone a month or two without symptoms in the last 2 years.
Posted 5/10/2022 9:24 PM (GMT -8)
Cq...what mesalamine exactly are you on?

q
Posted 5/11/2022 12:39 PM (GMT -8)
I’ve been on oral mesalamine 4.8g x 7 years. 1g Suppositories x 8 years, but have been alternating with the 4g enemas for the past 2 years increasing the frequency of the enemas based on symptoms. Not been able to wean off the suppositories no matter how slow I go. Doc recommended discontinuing the oral mesalamine because “if you truly only have proctitis, the oral meds won’t help.” And then recommended daily enemas x 2 weeks, every other day x 2 weeks, then twice a week. Said if I’m not controlled on that as maintenance, then I need a scope and stronger meds.

I respect his opinion, but also want to make sure I exhaust every option before move on to infusions.

Thanks!
Posted 5/11/2022 8:33 PM (GMT -8)
Cq...His remiss is to remove the oral mesalamine.

What exactly are your symptoms?
The enemas should be used nightly until your symptoms completely acquiesce. It could be as long as 4 months or longer...my longest was 4 months.
Its a huge commitment. Then there is the process of tapering...once again, it takes as long as it takes. 2 weeks nightly, then 2 weeks every 2nd night, then to twice a week is too fast and doesn't allow you to understand and do the process, because its strictly on a doctor's timeline.

I'm not saying don't go on other meds...I'm just saying there's a bias to its use, as well, many doctors don't work with their patients to use it effectively.
No it doesnt work for everyone, but it should at least be given a proper effort to its fullest potential.

q
Posted 5/13/2022 10:14 AM (GMT -8)
Hello All, I've been on Colozal 3 (750mg) X3 times a day for almost 16 years. I never came down or went up. Mine is left-sided colitis and by God's grace, this medication keeps me in remission. I'm on and off Probiotics. I removed all the foods that irritated my colon. I don't drink alcohol and soda. Only beer very occasionally. Are there any problems staying on Colozal with these dosages? When I asked my GI he said if it works stay as is.
Posted 5/13/2022 11:00 AM (GMT -8)
I held out for 7 years finally went on Entyvio life changer 1 year on it thankgod for medicare would of went on it earlier way to expensive all these meds are expensive gained 40 pounds back look like my old self again
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