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Posted Yesterday 10:06 PM (GMT -5)
I have been taking Lialda for the month since my diagnosis. I started having some pretty bad side effects, including debhilitating migraines. I saw a lot of improvement in my UC though, until this past week when the number of BMs started to increase and the blood started to reappear in larger quantities. My GI told me he doesn’t know if I have an issue with Lialda or the whole class of drugs, so he was going to switch me to a steroid — budesonide.

Is this a normal course of action? What is usually tried when people don’t tolerate mesalamines or they don’t work? i’m not too keen to be on a steroid since I have been working hard to lose weight and am now longer considered pre-diabetic. Regaining weight and possibly becoming diabetic is terrifying. My underdstanding is that this is not a long-term drug. Is that also correct?
Posted Today 7:17 AM (GMT -5)
Budesonide is a temporary medication (for a few months) taken during flares while we wait for another medication to work. Budesonide isn't usually your only medication.

If you are suspicious that you cannot tolerate Lialda and that class of medications then you'd have to go up the UC medication ladder to immunomodulators (imuran/azathioprine or 6MP) or biologics (humira/remicade). And you'd be taking those plus budesonide at the same time while you wait for the new class of meds to work. Given sufficient time to work, you discontinue the budesonide.
Posted Today 10:31 AM (GMT -5)
It is improbable that you cant tolerate 5ASA.
Majority of us can tolerate it very well. However you might be an exception.
5ASAs are the least problematic drugs for treating UC.
I would try to reintroduce them after several weeks on budesonide.

Good luck
Posted Today 8:54 PM (GMT -5)
Oligodor— It’s not improbable considering the existence of reported side effects. There are also plenty of threads on here that talk about experiencing severe side effects on one 5ASA but not others bc of the different coatings and delivery methods, as well as threads about intolerance to all of them. Someone has to account for the reported side effects and i suppose at least with Lialda that is me. We will be trying another 5ASA in a few weeks though to see the extent of it.
Posted 2/8/2018 6:52 AM (GMT -5)
OK, then switch medication ...
Posted 2/24/2018 6:41 PM (GMT -5)
Okay, so I've been on this stuff for almost 3 weeks, and it doesn't seem to be helping. I've returned to my original state of ~8 BMs a day with a lot of blood, including what looks like clots (likely just mucus). I've read budesonide can take longer than pred to kick in, but I figured it would have done something by now. The last two days I have just been feeling really weak, too. I'm concerned that I am losing way too much blood at this point.

Thoughts?
Posted 2/24/2018 9:28 PM (GMT -5)
Hi, I was having way too many flares on my Lialda after being on it with pretty good results for years. A month ago my Dr. added Azathioprine 100 mg a day, which is the generic form of Imuran. Maybe you can try this. It has cleared up the bleeding and diarrhea. The only thing is that I have to do periodic bloodwork and it has lowered my white blood count. Hope to hear you are better soon. Rowasa enemas have helped so much during flare ups, but my main problem is in the sigmoid area.




Diagnosed with UC in lower colon since 1990
Lialda 4g daily
Azathioprine 70 mg daily
Wheat allergy, have been glutten free for 1 year
Rowasa enemas as needed
Posted 2/25/2018 7:58 AM (GMT -5)

suchatravesty said...
Okay, so I've been on this stuff for almost 3 weeks, and it doesn't seem to be helping. I've returned to my original state of ~8 BMs a day with a lot of blood, including what looks like clots (likely just mucus). I've read budesonide can take longer than pred to kick in, but I figured it would have done something by now. The last two days I have just been feeling really weak, too. I'm concerned that I am losing way too much blood at this point.

Thoughts?

Budesonide is often given in low, fixed dosages as a delayed-release, oral pill (uceris/clipper/entocort EC) or via rectal enema/foam which is great for mild inflammation. If you don't respond to budesonide within a few weeks then you need its much stronger cousin prednisone. Prednisone works great for moderate and severe flares, as it can be given in much higher dosages.
Posted 2/25/2018 3:23 PM (GMT -5)
I so desperately do not want Pred. I am very terrified of the weight gain and the possibility of developing diabetes. Sigh. Why meeeee?
Posted 2/25/2018 3:44 PM (GMT -5)
I hear you. Uceris did nothing for me this time around. 40mgs of Pred, and I am still averaging 10xs a day while I wait for Entyvio to kick in. Yesterday I had thought my blood sugar was low, so I drank about 1/4 of a can of soda. The bad feeling was high blood sugar instead, so that made it tons worse. I felt horrible, and it scared me. I had an episode on Uceris, and told my GI I was afraid of having issues with this again.
Posted 2/25/2018 10:31 PM (GMT -5)
If I go on Pred, I am going to get a blood sugar monitor and monitor multiple times a day as though I have diabetes just to be cautious. I might also see about increasing my metaformin. I'm also going to have to mess with my diet. Right now, I can eat the rice, bread, potato and other low-fiber carbs my nutritionist told me to while flaring without gaining weight, because all the food goes through me so fast that I don't absorb a lot of the nutrients (ugh, supplements to the rescue). But on Pred? Nope.
Posted 2/26/2018 2:21 AM (GMT -5)
Suchatravesty- I was on and off pred for 3 years (on high doses the last year and for the whole year) I never got diabetes or anything like that, I only got moonface, insomnia, aches, and agitation.... I also got a little bit of acne this past week (I’m tapering) and I didn’t know that was a side effect either. The moon face is pretty annoying, I hate it but honestly those symptoms were way better than my UC symptoms. Budesonide never did anything for me either, I wish pred didn’t stop working for me, it was like a godsend the first few weeks.
Posted 2/26/2018 3:47 AM (GMT -5)
Mak -- I'm already at risk for diabetes because of my PCOS and my weight, which is why I am concerned. I had been actively losing weight prior to UC cropping up in my life and am no longer pre-diabetic, but a lot of the healthy foods I was eating (beans, lentils, whole grains, fibrous veggies) don't feel so great during a flare, and even the bounce of walking on the treadmill makes me sick to my stomach, and I need to be near a bathroom, so walking outside isn't an option. It will just be something that I have to be extra mindful about.

I am also really concerned about the mental health side effects, given my long-term history of depression. When I am depressed, I tend to get agitated easily, and insomnia makes this so much worse. There was a point in mid-2017 that I barely slept for weeks because of another health issue and its effects on my body, and not only did I end up spraining my ankle because I was so tired and not paying attention, I was a downright nasty person to be around. Ick.
Posted 2/26/2018 8:41 AM (GMT -5)
I understand you have reasons to not want pred. Avoiding it might be tough unless you want to consider something like remicade/humira for an emergency rescue medication. Cyclosporine is another pred alternative. Not sure how easy that would be to get approved by insurance... Both are very strong meds, and it might be analogous to trying to swat a fly with shovel (a bit overkill).
Posted 2/26/2018 11:59 AM (GMT -5)
Hmm maybe ask your doctor how long you would have to be on pred based on your symptoms and how high of a dose you would need. The mental side effects do suck but they go away once the medication is stopped. But I get why you wouldn’t want to go on pred due to the diabetes and depression, those are scary.
Posted 2/26/2018 9:55 PM (GMT -5)
Bahhhhh. GI e-mailed back and said Prednisone it is, and he wants some blood test and a TB test in case he has to put me on something stronger. I e-mailed back and asked how long, but he hasn't responded yet. The prescription hasn't shown up in my online portal yet, so no clue on dosage.

Bright side: if it works, I should be able to go back to exercising, which I miss dearly.
Posted 2/26/2018 11:25 PM (GMT -5)
Yea I had to take those blood tests and tb test before being put on biologics. Keep us updated!
Posted 2/27/2018 4:50 AM (GMT -5)
It's 1:48AM and I am awake and spending my early morning in/out of the bathroom. Plus I developed a terrible cough that is making it hard to sleep (woooo jackasses who get on public transportation while sick). I am thinking maybe I should sleep in here tonight? a pre-dawn potty party! smilewinkgrin smilewinkgrin
Posted 2/27/2018 7:02 AM (GMT -5)
"I am thinking maybe I should sleep in here tonight? a pre-dawn potty party! "

believe me, you are not the first one to have a solo slumber party in the loo !

when was the last time you had blood work done ?

how long have you been on the drugs listed in your sig ?

what kind of non wheat bread do you eat ?
Posted 2/27/2018 7:44 AM (GMT -5)
I was at your party last night! If only it didn't hurt, I probably would sleep. It takes time to get the biologics started between the tests and getting insurance approved. The waiting game can get so frustrating!
Posted 2/27/2018 1:51 PM (GMT -5)
Aside from all the other suggestions....maybe change your probiotics.

q
Posted 2/27/2018 7:47 PM (GMT -5)
Troubled — Lialda for a month before it stopped working (and started giving me migraines. i’d take the migraines if it worked). Budesonide for about 3 weeks. I am recently diagnosed though I have been having both bowel symptoms on and off for probably 3 years that I just thought were hemmies caused by my long history of constipation. 2017 also saw all sorts of other non-bowel symptoms manifest, so I suspect I am more than a mild case at this point.

Quincy — any suggestions? Might just nix the probiotic for now though I’ve taken them for a very long time.


GI gave me this prescription today which doesb’t seem too bad: Prednisone taper: take 2 tablets (40 mg) by mouth daily for 2 weeks, then 1 and one-half tablets (30 mg) daily for 2 weeks, then 1 tablet (20 mg) daily for 2 weeks, then one-half tablet (10 mg) daily for 2 weeks then stop.

I hope it works!
Posted 2/27/2018 8:07 PM (GMT -5)
Hope it gets you to feeling better, that’s a pretty good taper schedule.
Posted 3/3/2018 7:04 PM (GMT -5)
Day 4 of the prednisone and no more urgency, no more blood, and maybe 1-2 BMs a day. Yay! The BMs are long, thin and soft but solid, but I will take that any day. Hoping this will maintain throughout and during the taper to the new meds. All my blood work looks good (though I have high CRP, which is expected), so I should be able to go on something like Humira if needed. This is also very good because the UC caused my liver to get crazy inflamed earlier this year, with levels off the charts. They thought I had autoimmune hepatitis or PSC, but turned out to be UC.

Another pleasant side effect is that it is helping me power through this terrible coughing cold during the day.
Posted 3/3/2018 8:52 PM (GMT -5)

suchatravesty said...
Quincy — any suggestions? Might just nix the probiotic for now though I’ve taken them for a very long time.


Yes.....what's in my signature to start.

q
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