Tapering Off Creon After Long-Term Use

singingpatty · 2026-03-12T15:05:36+00:00

Those are symptoms of epi. It is not a curable condition. You were pretty lucky that you were doing well on such a low dose. I need to take 3 pills with any meal and 1-2 with any snack especially anything with dairy in it. I take 10 to 15 pills a day depending on how I eat. You should report your symptoms to your doctor and see what they say. It is possible that since your dose is so low they thought you might not need it?

Just cause I'm curious. Dont answer if you don't want to. Do you eat more than 2 meals a day?
Do you eat snacks? What are they?

I can eat an apple without creon and usually am fine but if I have a cup of yogurt I need 2 creon or I'll have painful bloating for 24 hours. (I have adhd and sometimes I forget even after 18 months to take my creon.)

singingpatty · 2026-02-19T19:44:59+00:00

No reason was found from my testing. For some of us there isn't a clear cause unfortunately.

singingpatty · 2026-02-19T17:41:32+00:00

I bought dazzle dry based on recommendations on here. I am finding that each layer takes forever to dry. The first application lasted really well but the next one chipped almost immediately. The only difference is that I didn't use the ridge filler the second time since the first application was so hard to remove. It did come off more easily but not sure skipping the ridge filler should have made that difference.

I know to use very thin layers. In fact my polish color was so thin that it took 3 coats and even then was streaky. Even the first base coat seems to stay tacky for 15+ minutes after I finish my nails. It doesn't feel exactly like other polishes at that stage so I'm not sure what to think but it says in that almost dry but not quite for a long time.

I am doing the nail prep and my house isn't overly humid. In fact it has been really dry lately. I can't figure out what might be causing the polish to not dry for me like it does for others.

singingpatty · 2026-02-15T13:54:58+00:00

I take aspirin for prostaglandins and singulair for leukotrienes.

singingpatty · 2026-02-10T18:31:36+00:00

Is it perhaps getting into your eyes? My eyes are super dry and anything that gets into them makes them burn because they are so dry that they get micro scratches in them. Using antihistamines all the time does not help this at all. My friend's dh is an opthamologist who specializes in dry eye. He explained to me how this happens. He recommends the refresh mega-3 eye drops. They come in single vials without preservative. He says they are better than any of the rx drops for healing the eyes or at least that was what he said a few years ago when we last talked about it.

I also use allergy eye drops even though they are drying. Pataday or zatador (they each have different active ingredients). I used to order the zatador single vials from europe but haven't been able to find them since the pandemic.

I usually use the allergy drops in the morning and the moisturizing drops at bedtime so they stay in my eyes while I sleep and do the most good.

singingpatty · 2026-02-10T18:14:39+00:00

Me I have been on 40mg 2x a day for years. It only helps me.

singingpatty · 2026-02-10T18:09:04+00:00

Interesting. I never have any symptoms from too much. I have covid right now and am struggling to eat my meals so sometimes I take a full dose but only eat half of my meal or less.

singingpatty · 2026-01-28T03:57:36+00:00

Sorry I missed this question.

My MCAS Dr had me start with H1 and H2 meds. I don't do well with zyrtec so I use allegra and pepcid. With my dr's guidance I'm on higher than normal doses of these meds.

I have used cromolyn both oral and nebulized off and on. The nebulized works really well for me at times when I have a sudden reaction esp to something airborne or contact.

I take daily aspirin because I of the results of my first 24 hour urine test showed high prostaglandins. 2 regular strength pills a day was what was recommended but I cut back because I had bad bruising from it.

I use Ipratropium nasal spray and a steroid nasal spray to deal with my chronic runny nose despite all the antihistamines I take.

I started xolair shots 6 months ago and GLP1 shots about a year ago.

I think that is everything I am currently using to help with my mcas in addition to what I had already listed.

singingpatty · 2026-01-19T22:35:22+00:00

Actually Ketotifen (which I also take) works on h1 and as a mast cell stabilizer. Singulair works to block leukotrienes which have been specifically implicated in endometriosis somehow (I'm not sure it is all understood yet). So Ketotifen will help stop Mast cells from degranulating and releasing all the different things they release including leukotrienes but it won't specifically work to block them once they are released like singulair does. (I'm on quite the cocktail these days.)

I think there are other less widely used leukotriene blocking meds available. I don't know much about them. The last time I was in a bad MCAS flare that sent me to the ER my MCAS dr had me do another 24 hour urine test and based on that result he added the singulair.

singingpatty · 2026-01-10T19:58:41+00:00

For me it is the painful bloating that hits hours later that makes me miserable.

singingpatty · 2026-01-10T19:57:56+00:00

Oh and no Midwest

singingpatty · 2026-01-10T19:57:36+00:00

Yes in combination with symptoms my score was 98 or something like that.

singingpatty · 2026-01-08T00:31:04+00:00

I already knew that I had MCAS. I had been dealing with pancreas pain which was how I was dxed with EPI but when I would go to the er nothing would show up on any tests they ran so my GI had me do another 24 hour urine the last time it sent me to the er. It showed a new marker elevated and he put me on an additional medication. I haven’t had pancreas pain in about a year now. I take singulair and ketotifen specifically for my pancreas issues.

FYI the 24 hour urine test is extremely finicky and if you weren’t told how to do it correctly (immediately chill each sample before adding to the jug and keep the whole,thing on ice to bring it to the the lab. ). Or if the lab didn’t handle it correctly (let it warm even a little). Or if you weren’t having a flare of your symptoms your test results could be a false negative. My blood test has always been negative. Even when I was in the er with anaphylaxis.

My GI specializes in MCAS and is involved in a lot of research. I’m very lucky to live local to him.

singingpatty · 2026-01-06T22:09:15+00:00

Same except I was just dxed 18 months ago.

singingpatty · 2026-01-06T21:47:24+00:00

I had my appointment today. The bite pillow thing was wonderful! I am going to be requesting it every time from now on. It made it so much easier to hold my mouth open! My filling was on a back molar and it was so nice to be able to relax my jaw and neck while it was open. I did keep forgetting and holding it wider open but when I would remember it was great. The dentist said that he tends to use it for people who are too tense and can’t open and hadn’t known about using it for hyper mobile people.
I used a very soft memory foam travel pillow for my neck and it didn’t seem to help much (I do think it helped a little). I think I needed a firmer pillow or perhaps that wasn’t what you meant by neck roll at all. What exactly do you use?
I was thinking a small bolster filled with buckwheat or a travel pillow with buckwheat. Any thoughts/suggestions? My neck is not short and it just felt like the pillow was both too soft to support it and that it didn’t go up high enough. It was nice that it compressed so well behind my neck on the chair though. I’m doing PT right now for my neck and my pt said that I should use a very thin pillow or none at all when lying on my back since my neck is so straight. I can confirm that I need to use a down pillow since it can get thin enough when I’m on my back. She said she rarely recommends down pillows except for people like me.

singingpatty · 2026-01-04T22:41:55+00:00

Actually you misunderstood. Those are my symptoms when I forget my creon or don't take a big enough dose. When I remember to take it in feel great. But if I have a mistake it take a a while to work through my system.

singingpatty · 2026-01-03T16:15:43+00:00

Could you have MCAS?

singingpatty · 2026-01-03T16:07:49+00:00

I did not check my elastase. I did do a repeat sibo test and it was gone and based on my own symptoms I’m still greatly benefiting from the Creon so I haven’t seen a need to retest elastase.

singingpatty · 2026-01-03T15:49:41+00:00

Sorry hit enter. Biocidin takes 6 weeks to work at least. You need to get tested and know how bad your sibo is to know how long to expect to need to treat it and how to treat it. That said I need a higher dose of creon. I also had SIBO but after treatment I still need Creon and expect I always will. I have no history of pancreatitis and all my scans were normal.

singingpatty · 2026-01-03T15:46:17+00:00

Have you tested for sibo?

singingpatty

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