Hi. I have been in the hospital 3 times in the past month due to low potassium and D of 15 to 20 times per day. After this last episode my GI said that I was in a critical state and the only drug he could recommend was Budesonide. I am terrified of steriods but I know that many of you use this drug. It sounds like you have pretty good luck with it. Has anyone had major bad reactions? Also if this drug is controlling the D and helping to heal the colon, how do you figure out what foods are bad. I am not able to order the allergy panel at this time and was trying a food journal and elimination diet. Overall I have lot about 65 pounds in the past few months and apparently have very few reserves left. Also, my insurance will not pay for it and the pharmacy says it will be $2000 a month. My doctor gave me enough samples for a 40 day trial and is trying to get help from the manufacturer to pay for it. Do you have any suggestions of where I can obtain it for a lesser price? Apparently it can be purchased from Canada for about $400 a month which is still way more than I can afford. I live in Oregon.
Thanking you in advance for any information you can give me regarding this drug. So far I have only been on it for a day. I am feeling really tired but that could be left over from the low potassium. Vivian
New to Budesonide and scared?
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Hi Vivian,
Sorry to hear about the hospitalizations. I can recall that back when I first began to have severe reactions, I had at least two different blood tests (several months apart) when I was potassium deficient. I remember those as rather large "horse pills", but I managed to swallow them. My tests also showed that I was anemic.
But to address your questions, no, I don't recall anyone here having a really adverse reaction to budesonide. It doesn't work for everyone, but it's not nearly as likely to cause adverse side effects as most other corticosteroids. It will eventually mask many food sensitivities so you just accept the diet on faith and stick to it. If you don't follow the diet faithfully, when you wean off the budesonide your symptoms will relapse.
You can buy budesonide at an affordable price at the link below. Don't order more than 3-months supply (270 capsules) at one time or Customs inspectors may confiscate your order, thinking that it's going to a drug dealer. These are the same capsules that some Canadian pharmacies sell after they mark up the price. You can order capsules dated to expire in November, 2018 at discounted prices. Otherwise the price is slightly higher. Personally, I don't worry about expiration dates on drugs. Tests show that most drugs are good for 30 or 40 years after the expiration date has passed. Drug companies use short expiration dates in order to persuade people to buy more drugs. Anyway, you can buy 270 capsules for $112.62, plus shipping charges. Shipping takes about 2 weeks, sometimes less. Members who have bought from this company say the service is good and the product works just as well as the ridiculously-priced name brand sold domestically.
https://www.alldaychemist.com/budez-cr.html
I hope this helps.
Tex
Sorry to hear about the hospitalizations. I can recall that back when I first began to have severe reactions, I had at least two different blood tests (several months apart) when I was potassium deficient. I remember those as rather large "horse pills", but I managed to swallow them. My tests also showed that I was anemic.
But to address your questions, no, I don't recall anyone here having a really adverse reaction to budesonide. It doesn't work for everyone, but it's not nearly as likely to cause adverse side effects as most other corticosteroids. It will eventually mask many food sensitivities so you just accept the diet on faith and stick to it. If you don't follow the diet faithfully, when you wean off the budesonide your symptoms will relapse.
You can buy budesonide at an affordable price at the link below. Don't order more than 3-months supply (270 capsules) at one time or Customs inspectors may confiscate your order, thinking that it's going to a drug dealer. These are the same capsules that some Canadian pharmacies sell after they mark up the price. You can order capsules dated to expire in November, 2018 at discounted prices. Otherwise the price is slightly higher. Personally, I don't worry about expiration dates on drugs. Tests show that most drugs are good for 30 or 40 years after the expiration date has passed. Drug companies use short expiration dates in order to persuade people to buy more drugs. Anyway, you can buy 270 capsules for $112.62, plus shipping charges. Shipping takes about 2 weeks, sometimes less. Members who have bought from this company say the service is good and the product works just as well as the ridiculously-priced name brand sold domestically.
https://www.alldaychemist.com/budez-cr.html
I hope this helps.
Tex
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.
Thank you so much for the info. I will certainly look into that company for the pills. I find it amazing the difference in price between countries.
I have my fingers crossed that I can take the medicine without any issues. It's just that most drugs and I have never gotten along and I am allergic to cortizone & prednizone so steriods really scare me. The doctor does say that most of this drug stays in the colon.
I am trying to use your beginning diet and hope to start being able to keep food in with these new pills. I would love to go into remission. Of course everyone on here probably wants the same thing. I really appreciate this board and your information. It has been a godsend. Even though I have a good GI doctor the info. I get about what to eat differs from one doctor to another. Have a great evening. Vivian
I have my fingers crossed that I can take the medicine without any issues. It's just that most drugs and I have never gotten along and I am allergic to cortizone & prednizone so steriods really scare me. The doctor does say that most of this drug stays in the colon.
I am trying to use your beginning diet and hope to start being able to keep food in with these new pills. I would love to go into remission. Of course everyone on here probably wants the same thing. I really appreciate this board and your information. It has been a godsend. Even though I have a good GI doctor the info. I get about what to eat differs from one doctor to another. Have a great evening. Vivian
Tex, I am really confused. I went to the site that you suggested and it appears that those pills are different than the Uceris that only comes in 9mg, which is what I am taking. In reading about budesonide it would appear that some of it targets the lungs. This Uceris says it goes directly to the colon (or small intestine) and only about 18% of the steriod goes into the rest of the body. Does it seem reasonable that there are different types of budesonide? If anyone takes Uceris I would love to hear what you think. The insert says you are only supposed to take it for 8 weeks but my GI doctor seemed to indicate that I might be on it 3 to 6 months. Thanking you in advance. Have a great day. vivian
Hi Vivian- the Budesonide I took was in 3 mg capsules and I took 3 every morning. Then after 4 months I was able to titrate down to 6 mg and eventually 3mg. So if the Budesonide you are looking at comes in 3mg capsules, that’s typical.
When you were hospitalized what did they give you for D then? Did they try Budesonide then too?
Best wishes,
Carol
When you were hospitalized what did they give you for D then? Did they try Budesonide then too?
Best wishes,
Carol
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
Vivian,
Budez-CR is a generic for Entocort, not Uceris. Uceris is labeled specifically for UC because it does not activate until it reaches the colon. Entocort is labeled for other IBDs also, because it activates in the terminal ileum and the colon, where MC is active. There is no generic for Uceris. The dose is the same, except that Uceris is all in one pill, so that the dose cannot be easily tapered.
The label on Entocort (and probably Uceris also — I haven't checked) specifies treatment periods of 8 weeks, but that's not the way that many doctors prescribe it.
Budesonide only targets the lungs when it is packaged in aerosols, to treat asthma or other breathing problems.
I hope this addresses your concerns.
Tex
Budez-CR is a generic for Entocort, not Uceris. Uceris is labeled specifically for UC because it does not activate until it reaches the colon. Entocort is labeled for other IBDs also, because it activates in the terminal ileum and the colon, where MC is active. There is no generic for Uceris. The dose is the same, except that Uceris is all in one pill, so that the dose cannot be easily tapered.
The label on Entocort (and probably Uceris also — I haven't checked) specifies treatment periods of 8 weeks, but that's not the way that many doctors prescribe it.
Budesonide only targets the lungs when it is packaged in aerosols, to treat asthma or other breathing problems.
I hope this addresses your concerns.
Tex
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.
Carol & Tex: Thank you for the information. Carol, when I was in the hospital they didn't give me anything for the D. They were too concerned with getting my potassium up to a reasonable level. After releasing me, I then went to the GI doctor, who gave me enough samples of Uceris to last for 6 weeks while I try to get it somewhere for less than $400 a month. I think the doctor felt that since I can't take most steroids, this was the only medicine where the majority of the steroids only target the colon. So far it seems to be working for me, however my potassium is still dropping and I have to take a lot of liquid potassium so that my heart doesn't do weird things. It will be interesting when he takes me off of it to see if the D is under control. As Tex says there isn't any way of tapering off it. I believe that they are trying to come up with a 6mg pill to be used for maintenance. I am just taking it one day at a time and trying to eat enough food to get my strength back. I kind of look like a I came out of a refugee camp as I have lost so much weight.
Have a great week. Vivian
Have a great week. Vivian