Hello everyone!
I'm really happy to have found your site--I'm going to need your support.
I had my first bout of "gurgle guts" right after Thanksgiving--two weeks of every-two-hour-episodes day and night--and I assumed it was something I ate. It went away, mostly, but I continued to have two-day bouts every other week. I mentioned it to my gp at an appointment for something else and he began testing. When the tests showed no cause and the symptoms continued he sent me to a gastroenterologist. The colonoscopy with biopsies ID-ed lymphocytic colitis in March 2010. They put me on Asacol 1800mg 3x/day.
Ten days later the ten-times-a-day business began again. It was either a flare up or a nasty GI bug that was going around, they said. They took me off Asacol and started a prednisone taper, beginning with 40mg/day. It worked great right away. When I got down to 10 mg/day though the symptoms returned. It was manageable at first, and I tried various diet and OTC experiments, but didn't notice any cause-and-effect relationships to wheat or dairy. Immodium didn't work at all; Pepto Bismol sometimes helped. I started taking the Asacol again. A few days later everything was much worse and I had cramps, fever and vomiting (all of which were new). The gastro decided it was an adverse reaction to Asacol and put me on Entocort (3 a day).
I have been symptom free since day three, but there is a problem. Big problem. My beloved insurance company has instituted an annual maximum on prescriptions, and I reached the limit at the end of June. Now, since I don't have an extra $1100/month to pay for it out of pocket, it looks like I won't be able to continue the only treatment that works.
So I have two questions:
1) With just a 30 day supply, do I have to taper down the dosage?
2) How can I get it at a realistic price?
I know, deep down, that my LC is really a symptom of the chronic stress of unemployment (and continual roller-coaster of high hopes then not even getting interviews), isolation, and general crappy quality of life that I have at the moment. If I allow myself to think about my situation, it scares the crap out of me. I have to push all that down, deny it, in order to be able to function every day. But it explodes in a way that can't be ignored. See what I'm getting at? I think it is a symbolic symptom of my general desperation.
That's it, that's my story. I'd really appreciate any thoughts, friends.
--Emmie
I'm Emmie, new member. I'm the one in the dark pants.
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Emmie,
Welcome to our internet family.
I hear you - this disease is about as stressful, (and depressing), as they come, and stress and depression just make it worse. It's a self-perpetuating disease - a "Catch-22" situation with sort of a reverse twist. In the book, "Catch-22", the only way that military personnel could get an approval on an application to be transferred off a desolate desert island, was if they were insane. Unfortunately, Catch-22 stated that anyone who wanted off that miserable island, was obviously not insane. LOL.
With MC, avoiding stress, helps to reduce the symptoms. "Catch-22" comes into play, however, because few things are more stressful than the symptoms of MC.
To address your questions:
1. You didn't say exactly how long you have been taking Entocort, but as far as any risk of damage to the adrenals is concerned, (because of corticosteroid use), no, you do not have to taper the dose before discontinuing the treatment, since you have only been taking it for a few months. If you had been taking it for more than, say, 6 months, then tapering the treatment would probably be a good idea. If you had been taking it for a year or more, then tapering it would be pretty much mandatory. (Have you tried a reduced dose? A few people are able to get by with less than the full dose, but obviously they are a small minority). Of course, in combination with a carefully-controlled diet, many members are able to get by with a reduced dose, often as little as a single capsule, every other day, (after the diet has had time to heal the gut).
2. You can buy a generic form of budesonide, Budez CR 3mg, at this overseas pharmacy. (Budesonide is the active ingredient in Entocort EC). The price is $4.50 for 10 capsules, which would amount to $40.50 for a 30-day supply of 90 capsules. Several members of this board are using this product, with good results.
http://www.inhousepharmacy.com/digestive/entocort.html
Or, you can buy genuine Entocort EC, from this overseas pharmacy:
https://www.alldaychemist.com/1283_Entocort-EC
for $175.00 per bottle of Entocort EC, 3mg, 90 Capsules, (a 30 day supply)
You can also get that same price at one or more Canadian internet pharmacies. I'm aware of at least one member who is buying Entocort for this price, from a Canadian pharmacy. The pharmacy she uses, requires a prescription. For Budez CR, (from the first pharmacy listed above), no prescription is needed, (because prescriptions written by U. S. doctors are invalid in other countries, anyway, and vice versa).
Remember, it usually takes several weeks to receive an order from an overseas pharmacy, because it has to go through customs when it arrives here. I have no idea what the new "health care reforms" will do to this option, (because the Obama administration made some deals with the pharmaceutical industry, which may require them to close this loophole, in the long run, as part of the deal), but current Customs policy is to confiscate orders addressed to dealers, (IOW, dealer quantities), but they are letting orders to individuals pass through.
Incidentally, even though I kept a careful food diary, I never could see any correlation between my reactions and gluten and/or dairy, either, but after I finally eliminated them completely from my diet, and allowed time for my gut to heal, my symptoms went away, (without any meds).
Again, welcome aboard, and please feel free to ask anything that comes to mind.
Tex (Wayne)
Thanks for injecting a little humor into an otherwise grim situation. Sadly, we all tend to wear dark pants, until we get our symptoms under control.Emmie wrote:I'm the one in the dark pants.
Welcome to our internet family.
I hear you - this disease is about as stressful, (and depressing), as they come, and stress and depression just make it worse. It's a self-perpetuating disease - a "Catch-22" situation with sort of a reverse twist. In the book, "Catch-22", the only way that military personnel could get an approval on an application to be transferred off a desolate desert island, was if they were insane. Unfortunately, Catch-22 stated that anyone who wanted off that miserable island, was obviously not insane. LOL.
With MC, avoiding stress, helps to reduce the symptoms. "Catch-22" comes into play, however, because few things are more stressful than the symptoms of MC.
To address your questions:
1. You didn't say exactly how long you have been taking Entocort, but as far as any risk of damage to the adrenals is concerned, (because of corticosteroid use), no, you do not have to taper the dose before discontinuing the treatment, since you have only been taking it for a few months. If you had been taking it for more than, say, 6 months, then tapering the treatment would probably be a good idea. If you had been taking it for a year or more, then tapering it would be pretty much mandatory. (Have you tried a reduced dose? A few people are able to get by with less than the full dose, but obviously they are a small minority). Of course, in combination with a carefully-controlled diet, many members are able to get by with a reduced dose, often as little as a single capsule, every other day, (after the diet has had time to heal the gut).
2. You can buy a generic form of budesonide, Budez CR 3mg, at this overseas pharmacy. (Budesonide is the active ingredient in Entocort EC). The price is $4.50 for 10 capsules, which would amount to $40.50 for a 30-day supply of 90 capsules. Several members of this board are using this product, with good results.
http://www.inhousepharmacy.com/digestive/entocort.html
Or, you can buy genuine Entocort EC, from this overseas pharmacy:
https://www.alldaychemist.com/1283_Entocort-EC
for $175.00 per bottle of Entocort EC, 3mg, 90 Capsules, (a 30 day supply)
You can also get that same price at one or more Canadian internet pharmacies. I'm aware of at least one member who is buying Entocort for this price, from a Canadian pharmacy. The pharmacy she uses, requires a prescription. For Budez CR, (from the first pharmacy listed above), no prescription is needed, (because prescriptions written by U. S. doctors are invalid in other countries, anyway, and vice versa).
Remember, it usually takes several weeks to receive an order from an overseas pharmacy, because it has to go through customs when it arrives here. I have no idea what the new "health care reforms" will do to this option, (because the Obama administration made some deals with the pharmaceutical industry, which may require them to close this loophole, in the long run, as part of the deal), but current Customs policy is to confiscate orders addressed to dealers, (IOW, dealer quantities), but they are letting orders to individuals pass through.
Incidentally, even though I kept a careful food diary, I never could see any correlation between my reactions and gluten and/or dairy, either, but after I finally eliminated them completely from my diet, and allowed time for my gut to heal, my symptoms went away, (without any meds).
Again, welcome aboard, and please feel free to ask anything that comes to mind.
Tex (Wayne)
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.
Hello Emmy 
, I am glad you found this support group. I am very sorry about your whole situation. Every time when I read it again, it keeps amazing how the same medication can differ so much in price. Entocort is in the US 10 times more expensive than in Europe, at least the Netherlands, for 90 pills you pay about 100 Euros. There are ways to get your medication cheaper, it's a generic version of entocort and you can order it online. Price is than about a 100 dollars a month (for 90 pills), I am sure other members here can help you further with this.
Please don't think your LC is only stress. It is not your fault you have LC. It is just something that happens to all of us. Some of us had milder bowel problems for years and suddenly it got worse and they got diagnosed with MC (like me). Stress can make the symptoms worse, but it is not the cause of MC.
Another solution a lot of us follow here is diet. I am not sure yet if food intolerance is the trigger of MC or that something else causes MC, but once the MC genes are triggered, the food intolerances are the fuel of the inflammation. The main food intolerance is gluten, followed by milk and in about half the cases also soy. A minor group also have other intolerances (egg, yeast, corn). My experience is, that diet is as important as, the medication.
Although at the moment it may seem impossible, but you can get your life back on track. A lot of us here have been, where you are now. It is not an easy road and in most cases some major diet changes are needed. My experience it is so much worth it.
Just take a look around, read as much as you can, and feel free to ask any question you want.
harma
, I am glad you found this support group. I am very sorry about your whole situation. Every time when I read it again, it keeps amazing how the same medication can differ so much in price. Entocort is in the US 10 times more expensive than in Europe, at least the Netherlands, for 90 pills you pay about 100 Euros. There are ways to get your medication cheaper, it's a generic version of entocort and you can order it online. Price is than about a 100 dollars a month (for 90 pills), I am sure other members here can help you further with this. Please don't think your LC is only stress. It is not your fault you have LC. It is just something that happens to all of us. Some of us had milder bowel problems for years and suddenly it got worse and they got diagnosed with MC (like me). Stress can make the symptoms worse, but it is not the cause of MC.
Another solution a lot of us follow here is diet. I am not sure yet if food intolerance is the trigger of MC or that something else causes MC, but once the MC genes are triggered, the food intolerances are the fuel of the inflammation. The main food intolerance is gluten, followed by milk and in about half the cases also soy. A minor group also have other intolerances (egg, yeast, corn). My experience is, that diet is as important as, the medication.
Although at the moment it may seem impossible, but you can get your life back on track. A lot of us here have been, where you are now. It is not an easy road and in most cases some major diet changes are needed. My experience it is so much worth it.
Just take a look around, read as much as you can, and feel free to ask any question you want.
harma
Welcome Emmie
So sorry you have MC and insurance will not cover the Entocort costs. I am one of those who use the BudezCR ordered via the internet and delivered to Hong Kong (for some reason via the USA).
It works well for me. I was on Entocort/BudezCR 9mg per day 28 July 2009 to 31st Jan 2010; 6mg per day 1st Feb to 10th March 2010; 3mg per day 11 March to 22 June 2010; 3mg every other day 23rd June 2010 to date.
I have also been on a GF,DF,SF,EF, nightshade and legumes free diet. Hopefully you will not have so many food intolerances - as has been said the usual suspects are Gluten and Dairy, followed by Soy. It can take time to get better, but (with ups and downs) you will hopefully see a gradual trend of improvement. I have got my life back because of this site and following the advice here.
Have a good read around this site. We will be with you on your journey to remission.
All best, Ant
So sorry you have MC and insurance will not cover the Entocort costs. I am one of those who use the BudezCR ordered via the internet and delivered to Hong Kong (for some reason via the USA).
It works well for me. I was on Entocort/BudezCR 9mg per day 28 July 2009 to 31st Jan 2010; 6mg per day 1st Feb to 10th March 2010; 3mg per day 11 March to 22 June 2010; 3mg every other day 23rd June 2010 to date.
I have also been on a GF,DF,SF,EF, nightshade and legumes free diet. Hopefully you will not have so many food intolerances - as has been said the usual suspects are Gluten and Dairy, followed by Soy. It can take time to get better, but (with ups and downs) you will hopefully see a gradual trend of improvement. I have got my life back because of this site and following the advice here.
Have a good read around this site. We will be with you on your journey to remission.
All best, Ant