Biologics (Entyvio) used as Treatment for CC?

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Cmducks
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Biologics (Entyvio) used as Treatment for CC?

Post by Cmducks »

Hello there,

I am new to the forum, so please forgive if this post should be elsewhere.

My story: I was diagnosed with Collagenous Colitis in 08/2017. Went on Entocort for 3 mos (9mg for 1 mos, 6mg for 1 mos, and 3mg for 1 mos). Symptoms came back after 2 weeks of Entocort discontinuation in late December 2017. D was tolerable enough, so I suffered for 7 mos with D 5-6x a day.

In early July 2018, got a sinus infection, took prescribed antibiotics to clear infection, and D returned with a vengeance, up to 10-12x a day, violent, watery, with bouts of incontinence, and horrible abdominal pain. In August, I started up some left over Entocort, and took it for 6 weeks, with no improvement at all. I was completely non-responsive to it. GI doc gave me Hyoscamine for abdominal pain, which works well. Gave me Cholostrymine, which I had a bad reaction to, so I stopped it. Imodium did not work, and Pepto made me nauseous, and I lost another 15 lbs since September. He had he discontinue Entocort in mid-September 2018, after non-response for 6 weeks.

Went back to GI, and he was baffled I did not respond to Entocort. He ran tests, I returned positive for occult blood in stool (iFOTB test) and positive for Lactoferrin test (inflammatory cells), and high monocyte count in CBC panel. He suspected Crohn’s, so he did another colonoscopy on me on Oct 1, which returned normal mucousa but with Lymphocytic Colitis in biopsied tissue, this time.

After colonoscopy a couple of weeks ago, he put me back on Entocort, which I’ve been on for 2 weeks now. It “sort of” works, D is still present, some days, I go 4-5x a day, it’s not watery, but it is definitely D. Two days it has worked like it is supposed to. Dr. still thinks I am mostly non-responsive to it, and I agree. Abdominal pain is still there, and I still have D.

My question: my doc now wants me to have an MRE (schedule for Nov) to check for small bowel problems, I.e., Crohn’s, but he referred me to the infusion clinic at my gastroenterolgy center. The infusion specialist and my GI want me to start Entyvio right away. They think I just have MC, and not Crohn’s, but want me to go on a biologic anyway because I’m a “corticosteroid refractory” patient, and their treatment options for me are “limited”.

I’m pretty terrified of the side effects of the biologic Entyvio: extreme hair loss, feeling like I have the flu all the time, joint pain, no energy... anyone on here have insight or advice?

Thanks,

Cmducks
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tex
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Post by tex »

Hi,

Welcome to the forum. Your story is typical of other members' experiences with gastroenterologists. They simply don't understand CC and don't know how to treat it. Most of us here control our disease by diet changes. Some take medications also. Most of us are able to successfully wean off medications and control our symptoms by diet alone. And some of us have never used any medications to treat this disease, relying on diet changes alone to stop the inflammation and heal our digestive system.

This forum was created over 13 years ago when some of us realized that our doctors knew nothing about this disease and they were lost, so we began coming here to compare notes on what worked and what didn't work. Like most of us, if you'd rather not take powerful medications for the rest of your life, you've come to the right place to learn how to control your symptoms without having to use biologics and other medications that have such unpleasant (and in some cases, dangerous) side effects.

Again, welcome aboard, and please feel free to ask anything.

Tex
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Cmducks
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Thank you

Post by Cmducks »

Thanks for the warm welcome!

My doc called me this morning and wants to put me on Uceris, as well as the Entyvio. I have controlled this with diet before: no dairy, gluten-free, low sugar, no FODMAP, no legumes, no raw veggies, limited fruit, and eating in very small portions.

The diet change and the condition caused me to lose 60 lbs over the course of 8 mos, which is great, but since I took the antibiotic in July, the flare up has been seemingly uncontrollable.

How do I restore my gut health? Taking probiotics didn’t really help. I’m willing to go back on the diet, and I am interested in getting a food allergy blood test so I can stop eating what’s contributing to the inflammation.

Thank you so much for your help! It’s nice to be understood here; my doc really just wants to push the meds, and I’m really reticent to start up on something I have to take that has such scary side effects.

Cmducks
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Post by tex »

The blood tests are useless for detecting the type of food sensitivities that we have. The antibodies are in stool, not the blood. The only tests that will accurately and reliably detect them, are the stool tests offered by EnteroLab in Dallas, Texas. If you order any tests, they will send you a collection kit that can be shipped back to them after collecting a stool sample. You can order the tests directly by phone or from their website, unless you live in New York or Maryland. In those states, the doctors have lobbied the legislature and convinced them to pass laws to prevent private citizens from ordering tests themselves. Most of us order the A1 panel and the C1 panel tests. If you ask the nurse who answers the phone at EnteroLab, she can give you the insurance codes for the tests, and then you can call your insurance company to see if they cover the tests.

Sometimes to get out of a severe flare like that, we have to stop all supplements (and maybe certain medications) and go back to an elimination diet. Many members here have had good luck with Uceris, but none of us have any experience with Entyvio — that sounds like a scary drug.

Tex
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
brandy
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Post by brandy »

It takes longer for budesonide to work subsequent times.

If the budesonide is "kind of" working consider staying on the high dose (3 pills) 3-4-6 months until things stabilize
and you can step down to two pills. If you are no longer having watery D the budesonide is working. I think
we had one European girl who was on the high dose of 3 pills for 7 months before she stepped down.

P.S. Your initial 3 month stint on budesonide was no way near long enough. 3 month stint on budesonide=high
rate of relapse. Your Doctor should know this. There are studies about this in his gastro journals.

Eliminate all other oral supplements and any other prescription oral meds that you can eliminate (with Drs approval).

Eat Gabes suggested eating plan. Link is at the top.

Consider give budesonide 6 months or switch to Uceris. High dose of budesonide for awhile will be a lot less risky
than the biologic.

Be aware it takes a long time to heal from MC. We had another recent poster who had stopped budesonide and
then restarted and it took awhile to re-work. If you were having WD 10-12(watery) x per day and now are
having non watery D 4-5 x per day you are improving and healing. I know it is frustrating.

It is extremely rare for MCers to go on biologics. The only one I remember who posted was a girl in her 30's and went on a biologic and she is now in a wheelchair and in palliative care.

These comments coming from an MCer who had a 9 month reflare and 9 months of WD. After 9 months I eliminated supplements and I was taking no other prescription meds. Went down to eating just 3 foods and started healing again.

For many of us oral probiotics made things worse or were non effective.

Stress relief is very key.

If you go on Uceris plan on a long stint. Most of our users are on it for way more than 3 months.

How old are you? Age also comes into play. A younger person will heal faster.

Welcome to the forum and sorry you are suffering.
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Post by brandy »

Are you on any other prescription drugs?

Birth control pills, Prescription hormones etc as well as many other prescription drugs will prevent remission.
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Post by Cmducks »

Hi Brandy,

I’m a 39 year old female, not on any rx hormones at all. Had hysterectomy when I was 32, kept ovaries in—noticed they are slowing down these days.

Yes, the probiotics I took were not working, caused extreme bloating and flatulence. Now they just make me feel like there’s a brick in my guts. I have been taking so much stuff to fix the inflammation supplements, vitamins, Entocort, it’s been ridiculous trying to figure out what causes or reduces what reaction I have. All I know is that I’m really inflamed, I get red welts on my face after eating sometimes. My husband makes spicy chicken wings for football days (I never touch the food he makes), and just the pepper that he grinds, the dust in the air makes my face break out.

I will move to Gabe’s eating plan. I did well for a while there, self teaching a new diet, but I did have a lot of trial and error with allergens, and of course, times where I got impatient and frustrated, and just wanted to enjoy normal foods again. I realize I can’t let that happen anymore until my flare is healed. I know this can take months... and months. ::sigh::

I am going to use the stress relief as much as possible, I’ve been working from home for a month now, and it has been a blessing. I haven’t been to the gym since late August, but I realize I need to incorporate some exercise again.

I had to admit this, but I have a vanity question... does Uceris really cause “Buffalo hump” behind the neck? I didn’t have any adverse moon face or weight gain with Entocort, but am expecting some with Uceris. Is this the case?

Thanks much!

Cmducks
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Post by tex »

I don't understand why you feel that Uceris might cause worse side effects than ordinary budesonide. It's just budesonide also, but it's in a form where none of it is is supposed to escape out of the intestines. Therefore, theoretically at least, the risk of developing corticosteroid side effects with Uceris should be considerably lower than with ordinary budesonide. For most people, if they are going to develop corticosteroid side effects, it will happen after taking a corticocosteroid at full dose for at least a year or more, but we are all different.

Histamine issues are somewhat common for MC patients. Here's some information that I copied from one of my previous posts: Antihistamines are often very helpful in certain situations, such as weaning off a budesonide treatment, where they can help prevent a relapse of symptoms. And some individuals find that when one type of antihistamine fails to help, another type might be much more effective. Many swear by fexofenadine (Allegra). And it's possible that increasing the dose might help. But antihistamines normally will not compensate for a diet that's high in histamine. In other words, avoiding or minimizing high-histamine foods is the only practical remedy if histamines are a major problem.

For example, bananas are considered a high-histamine food, but if you eat them before they become fully ripe, they are normally not yet a high-histamine food. When fruit is ripening (or chicken in the frig is aging, or whatever) histamine levels increase rapidly. Histamine growth may be slowed down at refrigeration temperatures, but it is stopped only by freezing at zero degrees F, or below. So freeze leftovers, buy only very fresh fish and chicken and cook them and then freeze any not eaten immediately, or freeze them if you are not ready to cook them. Turkey has a much lower histamine problem than chicken, and beef and pork usually don't cause histamine problems either. The worst offenders are fish, chicken, very ripe bananas, dehydrated foods, and fermented foods.

If you freeze leftovers in meal-size portions, they are easy to thaw (preferably in a microwave to reduce the time for histamine propagation), and they increase convenience significantly. I buy bananas a dozen or so at a time, peel them and freeze them individually in ziploc bags. About mid-morning each day I take one out of the freezer, let it begin to thaw for only a minute or two, and then smear some cashew butter or almond butter on top each time I take a bite. It makes a great snack, and it's as close to a desert as I ever eat these days. Freezing is the only practical way to keep bananas from quickly becoming a high-histamine food.

Antihistamines can be helpful in temporary situations, but some authorities are convinced that histamines deplete diamine oxidase ezyme (DAO). Therefore, in the long run, they can become counterproductive. The basic problem lies in the fact that the body uses DAO to purge excess (unused) histamine from circulation, and if DAO is depleted, histamine levels can continue to rise until they become problematic. One of the side effects of MC is that it depletes DAO, so the problem can get out of hand in a hurry, and this problem is usually difficult to resolve once initiated. It's important to note that antihistamines do not destroy or purge histamine from the body. They merely keep it from attaching to histamine receptors in the body. But that means that if DAO is inadequate, histamine levels in circulation continue to rise.

This is not substantiated by medical research, but I'm convinced that in some cases, it's the dominant mode of inflammation, thus making such cases refractive to normal treatment methods. If you have reason to suspect that histamine is a problem in your case, it might be the key that is perpetuating the inflammation.

I hope this helps.

Tex
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by Cmducks »

Hi Tex,

Thank you for the info, this is really helpful! I will do a deeper dive into reading in these threads so you don’t need have to copy paste too much of the info you’ve already provided to others. I do appreciate your attention and response to my questions though, so thank you! Knowing where to start is helpful! Knowing it’s MC and histamine problems are a good start to get to healing.

I guess I’m nervous about side effects because I’ve not been on a long bout of steroids before, and I’m just a nervous Nelly about it, that, and I’m rather uneducated about it. I will do my due diligence and read more on it. Just was curious if others have had bad reactions to it.

Cmducks
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Post by brandy »

It is the same medication as the Entocort but the tablet is extended release on the Uceris so it goes directly to the gut.

You might message one of our users Jari. I believe she was on Uceris.

Uceris is newer so fewer of our members have been on Uceris.
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Post by brandy »

Uceris is not that new although it is newer than Entocort. It has been around for awhile and is typically prescribed for UC.
If you are struggling eliminate the oral supplements and oral vitamins. I believe another recent poster
is taking a liquid Vitamin D and a liquid B vitamin. That is the way to go or just eliminate them
for 3-4 weeks. Oral supplements are difficult to digest and if we are in a flare we are not absorbing the
vitamin anyways.
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Post by Cmducks »

That makes sense. I will stay off the supplements for now, and I’m going to give Uceris a go for a while, hoping it works! Just took the first one today. I’ll reach out to Jari too. Thank you!

In Nov, doing the MRE, so if they find Crohn’s, then I will see what’s next, but I don’t want to go on Entyvio at all. Even if they find some IBD other than MC, that stuff is going to be a last resort for me. I know you guys are right, that MC-C and/or L can be handled with diet, so I’ll head back to that.

Oh!—one other question, can one have both Lymphocytic and Collagenous Colitis? I was dx’d with CC in 08/2017, and dx’d with LC in 10/2018. Does one progress to another?[/i]
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Post by tex »

LC and CC have been shown to segue back and fourth from one to another at random times. No one knows why MC presents with LC markers and CC markers at random times, but it does. Most of us never even realize this because we don't have additional colonoscopies. Technically, both LC and CC involve lymphocytic infiltration, but with CC, some of the collagen bands in the lamina propria have thickened so they measure more than 10 mm in thickness. That's irrelevant information in my opinion, as far as the patent and her or his doctor are concerned, because the clinical symptoms are the same and the treatment is the same for both LC and CC.

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by Kilt »

Here's some more information on Uceris, which is the brand name of Cosmo Pharmaceuticals.

Both Uceris MMX and Entocort EC are forms of oral budesonide. They both are encapsulated so they don't dissolve in the stomach, but lower down in the digestive tract. Uceris is made so that it dissolves even later in the digestive tract than Entocort because that is where ulcerative colitis is formed. Neither of these drugs is officially FDA approved for microscopic colitis -- no drug yet is. The budesonide that MC patients have traditionally been prescribed for MC is a generic form of Entocort EC.

Cosmo claims that Uceris has "up to a 90% first-pass metabolism", which is in the same ballpark as Entocort. Thus, they both should have about the same level of side effects. According to a study, both forms of budesonide have the same overall system availability, though Uceris gets into the bloodstream slower than Entocort, which is consistent with a greater colonic delivery of budesonide due to Uceris' later release mechanism. In short, assuming MC is just a large bowel disease, this may mean (my guess) that equivalent doses of Uceris may be more effective than Entocort.

The big problem has been price. Generic Entocort budesonide is extremely expensive in the USA even with drug plans. Brand name Entocort is astronomical. That is why many of us use Canadian pharmacies such as GlobalCareRx, or somewhat more expensive Indian pharmacies, which sell generic budesonide from India that is not FDA approved. Because Uceris is a brand name, it has also been astronomical in price for most people. However, Teva Pharmaceuticals won a patent lawsuit against Cosmo over Uceris last year, and just this July announced it was making an FDA-approved generic form of Uceris available in the USA. I don't know if it's on the shelves yet, but you could ask the pharmacies in your area.

P.S. I wouldn't take Entyvio except as a last resort.
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Post by Cmducks »

Kilt,

Thanks for all the great information! My pharmacy filled the extended release budesonide, so I guess that means it’s available. It’s $75 for a 30-day supply. :O

After much internal debate, I am not making a decision on the biologic until after the MR-Enterography test. If they detect Crohn’s in the small bowel, I’ll continue the internal debate, and move to the Crohn’s forum for more insight. If no Crohn’s is detected, and I won’t go on the biologic at all. Nope nope nope. I will handle it solely through diet—I suppose I could stand to lose another 15 lbs. :/

What baffles me is: I do have occult, and, sometimes visible, blood in my stool, and I know MC does not cause this, correct? Hemorrhoids were not detected in my most recent colonoscopy. I’ve been on Uceris for two days now, and there isn’t a change yet, so to be continued...

Thank you so much for all the help, you guys. I am sooo ready to feel better. Looks like this might take a while, I’ll put my patience cap on. :)

Sincerely,

Cmducks
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