One step forward...two steps back!

Feel free to discuss any topic of general interest, so long as nothing you post here is likely to be interpreted as insulting, and/or inflammatory, nor clearly designed to provoke any individual or group. Please be considerate of others feelings, and they will be considerate of yours.

Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh

User avatar
tex
Site Admin
Site Admin
Posts: 35070
Joined: Tue May 24, 2005 9:00 am
Location: Central Texas

Post by tex »

Terre wrote:I feel that I am definitely a nonresponder to the Entocort and Uceris. I read research that states that approximately 10 to 20% are nonresponders (says that nonresponders should be re-evaluated for other causes of diarrhea).
Actually, the percentage of nonresponders is much higher than that. You have to remember that medical researchers tend to have the same mindset as practicing clinicians, therefore they have the same warped opinion that drugs are the solution, and if a drug prescribed for a condition doesn't work, then there's something wrong with the diagnosis, not the drug. That's ridiculous because in the real world drugs simply don't work for everyone. If they were completely candid about the response rate, it would be significantly lower than 10 to 20 %. Why? Because there will always be a significant percentage of the responders who are responding to the placebo effect, not the drug itself.

But the reason why I even bring this up is because it invariably leads to the clinician going on a wild goose chase in an effort to find another cause for the symptoms despite the fact that she or he already has a perfectly good diagnosis. Many, many members here have been on that same merry-go-round over the years that this board has been in operation. There have been many, many unnecessary colonoscopy exams ordered, plus many other tests of various types. But looking back, in all honesty I can't recall a single case where anything significant was ever found out of all those "reexamined" cases. The only benefits that accrued from all that additional testing went to the bank accounts of the doctors and hospitals. The patients learned nothing new.

So the problem is virtually never the diagnosis — it's the treatment. We simply have not found the right treatments that will resolve every case. Some day we will find ways to make dietary treatments more effective. But if you are seeking a drug that will resolve every case I can safely guarantee that is impossible, because absolutely no drug is effective in 100 % of the cases. If you look at the efficacy rates of most drugs used to treat IBDs in published trials, you will find that for the most part they run around 65–70 % effective. Claimed efficacy rates of 80–90 % should be taken with a grain of salt, because in the real world, such response rates are as scarce as hen's teeth, especially for anti-inflammatory medications.

I'm sorry that you're having problems reaching stable remission. There is almost surely something in your diet that is sneaking in to prevent remission. What about histamines? Have you tried an antihistamine lately? Sometimes, when nothing else works, the right antihistamine can bring remission.

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.
terre
Gentoo Penguin
Gentoo Penguin
Posts: 475
Joined: Mon Jul 08, 2013 7:30 am

Post by terre »

You make things so clear and I appreciate you taking the time to respond.

I gave new GI doc my slides so "maybe" he would accept the diagnosis I have and not encourage me to have another colonoscopy. He thinks it either has to be CC or LC, but not both as stated in the original letter from the doc that did my colonoscopy in 2013.

I am tapering the Uceris and depending on what is determined at my GI visit next week, I think I will tell him that I'm taking a break for now.

I take an antihistamine when needed for seasonal allergies. I will try one every day for a while to see what the outcome is (no pun intended).....I take the 12 hour Wal-Fex (Walgreen brand) which is comparable to Allegra. Should I take the 24 hour? Is this brand okay? The active ingredient is Fexofenadine HCI 60 mg.

Thanks so VERY much for trying to help me!
Terre
User avatar
tex
Site Admin
Site Admin
Posts: 35070
Joined: Tue May 24, 2005 9:00 am
Location: Central Texas

Post by tex »

Here's why some physicians are confused about CC/LC diagnoses. All CC and LC patients have at least some degree of lymphocytic infiltration above the normal level, and many CC patients have a lymphocyte count high enough to justify a diagnosis of LC (more than 20 lymphocytes per 100 enterocytes). However, the diagnostic rules say that if the biopsy samples show any collagen bands that exceed 10 micrometers (microns) in thickness in one or more biopsy samples, then the diagnosis must be CC.

The confusion occurs when pathologists try to be helpful by listing both diagnostic markers, and the gastroenterologist doesn't understand the diagnostic rules and mistakenly thinks that the pathologist is saying that the patient has both forms of the disease. It's irrelevant, because the 2 forms are interchangeable and they can actually segue back and fourth from one to the other as time passes. But some GI docs apparently think that a patient cannot have both forms. :roll: If they understood the diagnostic rules they would realize that's an absurd assumption, because most CC patients have the diagnostic markers of LC. The only distinction is that LC patients do not have thickened collagen bands, so they cannot be diagnosed with CC.

It's only 1 disease, but it can have more than 1 type of diagnostic marker. So if you have CC then yes, you probably also have LC, but the bottom line is that it's a moot point. Hopefully your new doc will come to realize that, because it makes absolutely no difference in treatment options.

I'm not familiar with the Walgreen brand of fexofenadine, so I don't know what inactive ingredients it might contain. However, most of us take the 24-hour version of Allegra, which contains 180 mg of fexofenadine. The difference is sort of like taking 1 Entocort capsule per day when it takes 3 to do the job. For a few individuals, the low dosage might work, but for most of us, we need the full dose in order to get a response that clearly shows us whether or not it is helping. If you can't tell any difference within 1 or 2 days with an antihistamine, it probably isn't helping (at least not enough to get the job done). Some members here take an antihistamine in the morning, and another at bedtime (some take benadryl, for example, at bedtime, because it causes drowsiness) if the first one doesn't control their symptoms for 24 hours.

You're very welcome. I hope that some of this is helpful.

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
King Penguin
King Penguin
Posts: 2909
Joined: Sun Oct 16, 2011 9:54 am
Location: Florida

Post by brandy »

Hi terre, we are all different when it comes to antihistamines. Suggest try the Allegra equivalent for a couple of weeks. If no response switch to Claritin or Zyrtec. Terre, sorry punctuation I am on phone.

Tex, great reply above.
terre
Gentoo Penguin
Gentoo Penguin
Posts: 475
Joined: Mon Jul 08, 2013 7:30 am

Post by terre »

Tex, Brandy.....thank you for replying.

Thanks for clearing up CC vs LC.....I thought I had read somewhere that it's the chicken and egg thing. They think one is the precursor to the other. Tex, you would think the doc would explain what you just explained. Thank you for sharing your knowledge.
Some members here take an antihistamine in the morning, and another at bedtime
As far as the Allegra, they take the 24 hour version in the morning and again at bedtime (whether it be Allegra, Benadryl or one of the others)? I've always been afraid to take more than suggested.

I will get the 24 hr. Allegra brand (just need to know if it's safe to take two in one day).

Thanks,
Terre
brandy
King Penguin
King Penguin
Posts: 2909
Joined: Sun Oct 16, 2011 9:54 am
Location: Florida

Post by brandy »

I've only taken the 24 hour once a day or the 12 hour twice a day. Just my experience. My experience is the 12 hour once a day is not effective. 24 hour once a day really dries me out but I am in a drying air conditioned environment much of the time.

Perhaps others can elaborate on the dose.
terre
Gentoo Penguin
Gentoo Penguin
Posts: 475
Joined: Mon Jul 08, 2013 7:30 am

Post by terre »

Thanks Brandy!

Terre
hollyweb
Gentoo Penguin
Gentoo Penguin
Posts: 288
Joined: Fri Jul 01, 2016 4:08 pm
Location: Cameron Park, CA

Post by hollyweb »

Hi Terre,

What seems to be working for me is to take a 180 mg Allegra (24 hr) in the morning, and a 25 mg Benadryl at night. I do that for a week or so then switch to taking a 24 hr Zyrtec in the morning, and a 25 mg Benadryl at night if needed for the next week, then switching back. My thought is to try to avoid dependence issues; however, it's still early in the game for me and I definitely have histamine issues. Learning about the antihistamines here has made a world of difference for me. Taking those, eliminating my trigger foods from EnteroLabs, plus taking pancreatic enzymes before/with each meal (I also have severe malabsorption issues) have all helped my digestive system calm down immensely, and without Budesonide.

Wishing you all the best,
~ Holly
2015 Hashimoto's, MTHFR
2016 LMC, Malabsorption
2017 Lymphocytic Dermatologic Vasculitis

"I strive to live in my heart, not in my head!"
User avatar
tex
Site Admin
Site Admin
Posts: 35070
Joined: Tue May 24, 2005 9:00 am
Location: Central Texas

Post by tex »

Terre wrote:As far as the Allegra, they take the 24 hour version in the morning and again at bedtime (whether it be Allegra, Benadryl or one of the others)? I've always been afraid to take more than suggested.

I will get the 24 hr. Allegra brand (just need to know if it's safe to take two in one day).
As Holly mentioned, those who take multiple doses usually have more serious histamine problems. If I were in your situation I would probably try what Brandy suggested — taking a 12-hour antihistamine twice a day to see how that works. Or you might be able to split the 24-hour tablet (it should be easy with a pill-splitter).

It's safe to take higher doses, but as with any medication, it's always best to take only as much as is needed to resolve the problem. If using 12-hour doses twice a day doesn't work, I would try the 24-hour version and take it twice a day (or a combination of 2 different brands) to see if that works.

We know how much is generally safe to take because when treating chronic urticaria issues, allergists regularly prescribe up to 4 times the labeled dose of antihistamines daily for extended periods (many months) without any ill effects. We have 1 or 2 members who have used similar treatments for chronic urticaria. But I wouldn't exceed 4 times the labeled dose because we also know that 10 times the labeled dose has been shown to be a possibly fatal dose in some case studies.

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.
terre
Gentoo Penguin
Gentoo Penguin
Posts: 475
Joined: Mon Jul 08, 2013 7:30 am

Post by terre »

Holly and Tex, you have given me much to think about. I had never considered dependency issues and I'm sure there could also be rebound issues.

I am going to start with 1 - 12 hr. (twice a day) and go from there. I am SO hoping it helps.

Thank you all.....big hugs all around! :bigbighug:

Terre
hollyweb
Gentoo Penguin
Gentoo Penguin
Posts: 288
Joined: Fri Jul 01, 2016 4:08 pm
Location: Cameron Park, CA

Post by hollyweb »

Terre ... to my knowledge there aren't any dependency issues commonly associated with these types of antihistamines. In my lifetime, this is just something that I've always tried to be mindful about, even before ever having any auto-immune conditions.

The one time I was ever "addicted" to anything was during my late 30's, when my allergies were escalating alarmingly and I suddenly realized that the over-the-counter nasal spray (Afrin) I was using was something I was purchasing every week, instead of every 5-10 years!! It was 4 days of %&*# and having to breathe through my mouth to go through that withdrawal!

Tex and others will be better able to speak to this. I just didn't want to create unnecessary worry for you. It's a "lifestyle" thing for me, not a "medical" thing. You will be fine!

~ Holly
2015 Hashimoto's, MTHFR
2016 LMC, Malabsorption
2017 Lymphocytic Dermatologic Vasculitis

"I strive to live in my heart, not in my head!"
terre
Gentoo Penguin
Gentoo Penguin
Posts: 475
Joined: Mon Jul 08, 2013 7:30 am

Post by terre »

VERY good info Holly. I have heard of many others that the spray has gotten to. I was told to use it and was very mindful of how often.....then my eye doc said "No more" due to being a glaucoma suspect.

Thanks for wanting to ease my concerns....if a smaller dose will work, that will be great....if not, I will increase.

Terre
User avatar
tex
Site Admin
Site Admin
Posts: 35070
Joined: Tue May 24, 2005 9:00 am
Location: Central Texas

Post by tex »

Holly and Terry,

As far as I'm aware, only the nasal sprays cause a serious addiction problem. Back in prehistoric times when I was in college, I had a roommate in grad school who became addicted to those nasal sprays. He used one every 10 to 15 minutes during the day, and whenever he woke up during the night (which was often). He was a brilliant electrical engineer, at the top of his class, but he couldn't stop using those blasted sprays.

It may have just been a coincidence, because his father had also had atherosclerosis, so he surely had the genes, but he died of atherosclerosis when he was in his 30s (his father had died when he was in his late 50s).

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.
terre
Gentoo Penguin
Gentoo Penguin
Posts: 475
Joined: Mon Jul 08, 2013 7:30 am

Post by terre »

Oh my! Maybe it's a blessing that I can't use them!!! Since they are now OTC, I hate to think of the people that overuse them....I know they just think they need them.

My father was an alcoholic.....an addiction is an addiction. My father died from head and neck cancer at 60....they said the drinking was bad enough and then you add the smoking. I smoked for 5 years and thank goodness I was able to stop. I've never been much of a drinker due to witnessing his alcoholism.

On a happier note, I hope you all have a GREAT day!

Terre
brandy
King Penguin
King Penguin
Posts: 2909
Joined: Sun Oct 16, 2011 9:54 am
Location: Florida

Post by brandy »

Terre,

It looks like me taking three days worth of 180 mg (1 24 hour tablet in the evening) of fexofenadine (allegra) has kicked me out of a three month flair. One week ago I had WD 4 x in morning. I've been eating a lot of protein, bananas and a little rice for around the last 8 weeks. I've been in a flare for three months. The last two weeks I've been on pepto 8 per day and the last week immodium 4 per day (max label).

I've used benedryl in the past to kick me out of a flair and it has also worked for me. The issue with benedryl is it is in the class of anticholinergic drugs that are linked to memory issues. I've stopped taking benedryl as my mother has dementia/alzheimers. I learned of the anticholinergic connection on our forum.

Immodium is also an anticholinergic drug. I've taken 21 in the last week. 4 per day x 7 days. I had no choice as I was traveling. Funny thing is I had memory issues midday today. I'm wondering if It was the 21 immodiums I've taken in the past week.

For me personally I would try benedryl again if I had to but I would try not to stay on it too long. If I had no other choice I would take immodium again.

Sadly with MC we don't have a lot of options: diet, entocort (budesonide), uceris, pepto bismol, zyrtec, claritin, allegra, benedryl, the bile acid sequestrants, and LDN. (listed in no particular order) I have an appointment to talk with PCP about bile acide sequestrants but I don't think I will need them now. I stopped the immodium today when I got the solid stool and I've stopped the allegra.

Good luck with everything.

Brandy
Post Reply

Return to “Main Message Board”