HealingWell
Search Close Search
☰

What else

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 11/28/2021 2:10 PM (GMT -8)
What else could I try before imuran. Mesalazine appears not to be working
Posted 11/28/2021 3:05 PM (GMT -8)
Are you on oral and rectal enemas of mesalamine?
q
Posted 11/28/2021 4:11 PM (GMT -8)

quincy said...
Are you on oral and rectal enemas of mesalamine?
q


Currently on 2x1g mezavant oral. No rectal. Steroid taper down to 15mg and the antibiotics which I don’t think are making any difference
Posted 11/28/2021 7:43 PM (GMT -8)
In most GI’s opinions immunosuppressants are more affective and have less side effects than steroids.

After 15 plus years of dealing with an IBD I’d take an immunosuppressant before I’d take another steroid. I had to have a hip replacement in my 30’s because of steroids.
Posted 11/29/2021 1:52 AM (GMT -8)
I stuck to Mesalamine for 7 years and did not move up to Imuran. The result was that my UC went from moderate left-sided to severe pancolitis. The most dangerous route for you could be not moving to a more aggressive therapy when you need to. It could increase your risk of cancer and colectomy long-term.

The old way of thinking about autoimmune diseases as giving patients more aggressive therapies only when they become sicker is a thing of the past...thankfully. Nowadays doctors aim to modify the course of the disease as soon as they can and if needed to improve patients outcomes.

Staying off Imuran and playing around with Mesalamine pills and silly rectal formulations was the worst decision I could ever have made for my health. The issue on here is that people with mild to moderate UC who have had success with Mesalamine try and advertise such as the only way to go for all of us including those with moderate to severe disease. If your disease is becoming more aggressive then it requires more of an aggressive therapy.

Post Edited (damo123) : 11/29/2021 2:56:47 AM (GMT-7)

Posted 11/29/2021 2:57 AM (GMT -8)
Max dosage for mesalamine is 4.8g oral and 4g rectal. Is there a reason your docs didn't up you to the max before recommending Imuran? Many people do fine on max doses of mesalamine long term and never have to go to a different class of drugs.

Rectal meds really do the trick for many people. Mesalamine enemas don't work for me but steroid enemas worked well on stubborn rectal inflammation and I used them for several months until remicade kicked in.

Unfortunately a mesalamine only approach didn't work for me, but I respect that it does for others.

Good luck!!
Posted 11/29/2021 2:50 PM (GMT -8)
I agree with the others. It’s more dangerous to have uncontrolled inflammation than to go to more effective drugs, IMO.

There are blood tests they can run that will show if you will respond to immunosuppressants like imuran. My doctor ran one on me that showed I was a non metabolizer of that class is drug so we moved straight to entyvio. If your insurance is requiring you to try imuran first you have no choice (unless that blood test shows otherwise).
Posted 11/29/2021 3:25 PM (GMT -8)

CCinPA said...
Max dosage for mesalamine is 4.8g oral and 4g rectal. Is there a reason your docs didn't up you to the max before recommending Imuran? Many people do fine on max doses of mesalamine long term and never have to go to a different class of drugs.

Rectal meds really do the trick for many people. Mesalamine enemas don't work for me but steroid enemas worked well on stubborn rectal inflammation and I used them for several months until remicade kicked in.

Unfortunately a mesalamine only approach didn't work for me, but I respect that it does for others.

Good luck!!


Can I add the rectal steroids with prednisone
Posted 11/29/2021 3:26 PM (GMT -8)

FlowersGal said...
I agree with the others. It’s more dangerous to have uncontrolled inflammation than to go to more effective drugs, IMO.

There are blood tests they can run that will show if you will respond to immunosuppressants like imuran. My doctor ran one on me that showed I was a non metabolizer of that class is drug so we moved straight to entyvio. If your insurance is requiring you to try imuran first you have no choice (unless that blood test shows otherwise).

Thankyou. Do you know the name of the test
Posted 11/29/2021 3:27 PM (GMT -8)
Thanks everyone. I really am at the point of doing whatever it takes. It’s just scary. Thanks for the support
Posted 11/30/2021 8:36 PM (GMT -8)

Theanxiousaries said...

FlowersGal said...
I agree with the others. It’s more dangerous to have uncontrolled inflammation than to go to more effective drugs, IMO.

There are blood tests they can run that will show if you will respond to immunosuppressants like imuran. My doctor ran one on me that showed I was a non metabolizer of that class is drug so we moved straight to entyvio. If your insurance is requiring you to try imuran first you have no choice (unless that blood test shows otherwise).

Thankyou. Do you know the name of the test

Thiopurine Methyltransferase I guess I have a deficiency— following is an explanation from medlineplus:
Thiopurine S-methyltransferase (TPMT) deficiency is a condition characterized by significantly reduced activity of an enzyme that helps the body process drugs called thiopurines.
Posted 12/1/2021 2:54 AM (GMT -8)
Yea, TPMT is the blood test they need to run to see if you can process thiopurines. (Like Imuran and 6-mp). I had it done before I was put on Imuran.
Posted 12/1/2021 3:49 AM (GMT -8)

momto2boys said...
Yea, TPMT is the blood test they need to run to see if you can process thiopurines. (Like Imuran and 6-mp). I had it done before I was put on Imuran.

Yes, they should do this test as standard. Even if you "pass" this test, it doesn't tell you whether or not imuran is going to get you into remission.
Posted 12/2/2021 4:33 AM (GMT -8)

damo123 said...
I stuck to Mesalamine for 7 years and did not move up to Imuran. The result was that my UC went from moderate left-sided to severe pancolitis. The most dangerous route for you could be not moving to a more aggressive therapy when you need to. It could increase your risk of cancer and colectomy long-term.

The old way of thinking about autoimmune diseases as giving patients more aggressive therapies only when they become sicker is a thing of the past...thankfully. Nowadays doctors aim to modify the course of the disease as soon as they can and if needed to improve patients outcomes.

Staying off Imuran and playing around with Mesalamine pills and silly rectal formulations was the worst decision I could ever have made for my health. The issue on here is that people with mild to moderate UC who have had success with Mesalamine try and advertise such as the only way to go for all of us including those with moderate to severe disease. If your disease is becoming more aggressive then it requires more of an aggressive therapy.

mine was mild for 9 years on mesalazine. It’s now moderate (30cm) it was previously 8cm. I believe inflammation simmers long before we get symptoms. The only thing I can put my flare down to is starting menopause.
Posted 12/2/2021 4:37 AM (GMT -8)

poopydoop said...

momto2boys said...
Yea, TPMT is the blood test they need to run to see if you can process thiopurines. (Like Imuran and 6-mp). I had it done before I was put on Imuran.

I just checked my pathology and he has ordered the blood test

Yes, they should do this test as standard. Even if you "pass" this test, it doesn't tell you whether or not imuran is going to get you into remission.

Posted 12/2/2021 12:36 PM (GMT -8)
Usually I don't agree with damo but on this occasion I agree and had a similar experience- suffered with horrible symptoms and allowed my UC to progress because I was afraid of immunosuppressants. Actually spent months trying out various diets and alternative healing modalities (which was NOT helped by being in a yoga school where having a disease was regarded as a personality flaw rather than a physiological problem). It got to the point where I was having accidents in public. Then I decided I'd rather take imuran.
Posted 12/2/2021 2:14 PM (GMT -8)
I think everyone resists biologics and immunosuppressants to our detriment. I know I was scared silly to “go to the next level” where it almost felt like a death sentence. Or at least a ball and chain sentence where you are dependent on a medication for the rest of your life.

But I found those fears to be unrealistic once I was on a biologic. Having a life again free of pain and accidents and not being able to eat— so worth it!!!

And for the next couple years after I found what harm all that inflammation was doing to me when the dr kept finding polyps — some pre-malignant — for the next couple years. My last scope was clean!
Posted 12/4/2021 2:37 AM (GMT -8)

FlowersGal said...
I think everyone resists biologics and immunosuppressants to our detriment. I know I was scared silly to “go to the next level” where it almost felt like a death sentence. Or at least a ball and chain sentence where you are dependent on a medication for the rest of your life.

But I found those fears to be unrealistic once I was on a biologic. Having a life again free of pain and accidents and not being able to eat— so worth it!!!

And for the next couple years after I found what harm all that inflammation was doing to me when the dr kept finding polyps — some pre-malignant — for the next couple years. My last scope was clean!

thanks flower girl. It’s definitely a mental think worrying about all the possible side affects
✚ New Topic ✚ Reply