After two years of suffering, I've decided to take positive action. My MC is not going to go away by itself. I'm reading Wayne's book, and I've just received the results of my Enterolab tests. Sure enough, I'm sensitive to gluten, dairy, eggs, beef, and tuna.
I started the "BRAT" diet today: bananas, rice, applesauce and tea. I will stick to that for three days, then add cooked carrots, plain chicken and baked sweet potatoes. Then slowly add more foods to which I'm not sensitive (one at a time).
I can only afford a one month supply of Budesonide, so I'm starting that today.
I'm drinking plenty of water and going for a nice healthy walk every day. Any other suggestions? I want to meet Norman again! I miss him!!
Margaret
My New Year's Strategy - What Do You Think?
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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rivendweller
- Posts: 11
- Joined: Mon Oct 17, 2011 5:32 pm
- Location: Glencoe, California
Hi Riven and welcome!
Tex will probably chime in at some point as I believe he has a source for low cost Budesonide from India. I was on budesonide for about 4.5 months and one month may not be a long enough time. If you get in a pinch I believe I have about 27 budesonide pills left over that I'd be glad to send you. I believe I have the generic.
Your diet plan sounds extremely safe.
You should feel a lot better before you know it.
Regards, Brandy
PS. I found the walks to be extremely helpful.
Tex will probably chime in at some point as I believe he has a source for low cost Budesonide from India. I was on budesonide for about 4.5 months and one month may not be a long enough time. If you get in a pinch I believe I have about 27 budesonide pills left over that I'd be glad to send you. I believe I have the generic.
Your diet plan sounds extremely safe.
You should feel a lot better before you know it.
Regards, Brandy
PS. I found the walks to be extremely helpful.
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Sheila
- Rockhopper Penguin
- Posts: 1150
- Joined: Wed May 18, 2011 5:10 am
- Location: Palm Beach Gardens, Fl
Welcome. Tex will give you all the input you need. I do agree that one month of entocort will not be enough. I've been on it for about a year and a half, GF, SF, DF etc etc I've been able to wean down to one capsule every other day. However, there have been times recently when I've had to up the dosage to relieve severe symptoms. I buy my generic entocort through a Canadian pharmacy. It is a lot more affordable and has been reliable.
Good luck with your sensible, well thought out plan. :-)
Sheila W
Good luck with your sensible, well thought out plan. :-)
Sheila W
To get something you never had, you have to do something you never did.
A person who never made a mistake never tried something new. Einstein
A person who never made a mistake never tried something new. Einstein
Hi,
Welcome to the board. Congratulations on taking the bull by the horns.
For many of us, that's the hardest part. Once we get into it, and taste success, it becomes easier as we go.
The pharmacy that Brandy mentioned is in India. It may sound like a shady operation, but India is where most of the generic drugs sold in this country (and in Canada) are made. Generic budesonide can be ordered from the pharmacy at the link below, for $121.50 plus shipping cost, for a 90-day supply (270 capsules). Don't order more than a 90-day supply at one time, because Customs will confiscate them on the basis that larger orders might be going to a dealer, and it is illegal to resell drugs imported without an importers license.
You can order the same identical capsules (Budez CR) from several Canadian pharmacies, for a slightly higher price (they get them from the same place and mark them up). You would need a prescription to order from a Canadian pharmacy, but no prescription is needed to order from the Indian pharmacy (because prescriptions written by a U. S. doctor are invalid outside the borders of the U. S., anyway). Quite a few members here have ordered from the pharmacy at the link below. It can take from 2 to 3 weeks to receive an order (since the time mostly depends on how long it takes to get through Customs), so you would need to place an order soon in order to receive the meds before you run out of your present supply
https://www.alldaychemist.com/1447-budez-cr-3mg.html
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to the board. Congratulations on taking the bull by the horns.
For many of us, that's the hardest part. Once we get into it, and taste success, it becomes easier as we go.The pharmacy that Brandy mentioned is in India. It may sound like a shady operation, but India is where most of the generic drugs sold in this country (and in Canada) are made. Generic budesonide can be ordered from the pharmacy at the link below, for $121.50 plus shipping cost, for a 90-day supply (270 capsules). Don't order more than a 90-day supply at one time, because Customs will confiscate them on the basis that larger orders might be going to a dealer, and it is illegal to resell drugs imported without an importers license.
You can order the same identical capsules (Budez CR) from several Canadian pharmacies, for a slightly higher price (they get them from the same place and mark them up). You would need a prescription to order from a Canadian pharmacy, but no prescription is needed to order from the Indian pharmacy (because prescriptions written by a U. S. doctor are invalid outside the borders of the U. S., anyway). Quite a few members here have ordered from the pharmacy at the link below. It can take from 2 to 3 weeks to receive an order (since the time mostly depends on how long it takes to get through Customs), so you would need to place an order soon in order to receive the meds before you run out of your present supply
https://www.alldaychemist.com/1447-budez-cr-3mg.html
Again, welcome aboard, and please feel free to ask anything.
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.
Welcome Riven. I agree with everyone here. I was on Entocort for 6 months, but am completely off of it now. However, it takes a while and a very slow progression downward in dosage to be successful. If you can't afford the Budesonide, maybe the Pepto treatment would work for you. Many people have had success with it.
Your diet sounds perfect. I hope you feel better soon, but know that this thing takes time!... and patience!
Leah
Your diet sounds perfect. I hope you feel better soon, but know that this thing takes time!... and patience!
Leah
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rivendweller
- Posts: 11
- Joined: Mon Oct 17, 2011 5:32 pm
- Location: Glencoe, California
Thank you so much everyone for the good advice! My health insurance does not cover prescriptions, and budesonide is over $1,200 for a 30 day supply. I managed to get some for $10 before I had to downgrade my coverage. My old coverage that included prescriptions was bumping up to $800 per month!
The India option sounds great, Tex. BTW, your book is wonderful! I am learning so much. You are providing a needed service to our "community of the confused."
When my MC first hit, it was such a shock. I went from totally Norman to constant D overnight when I caught a virus in December 2010. My doctors gave useless advice until one finally decided to send me for a sigmoidoscopy in September 2011. Then the bad news came in October. An Rx for budesonide was all that came from my gastroenterologist. I've never had an office visit with her because I've had difficulty getting an appointment (mostly my own fault). I kept hoping the MC would just go away on its own. I never took that first Rx because I thought, "What?! Steroids?!! No way!!!" Stupid me.
It only took one incident of incontinence to convince me to take care of the problem. I was unable to make it the 20 feet from my bed to the bathroom one morning recently. Now I'm determined.
Margaret
The India option sounds great, Tex. BTW, your book is wonderful! I am learning so much. You are providing a needed service to our "community of the confused."
When my MC first hit, it was such a shock. I went from totally Norman to constant D overnight when I caught a virus in December 2010. My doctors gave useless advice until one finally decided to send me for a sigmoidoscopy in September 2011. Then the bad news came in October. An Rx for budesonide was all that came from my gastroenterologist. I've never had an office visit with her because I've had difficulty getting an appointment (mostly my own fault). I kept hoping the MC would just go away on its own. I never took that first Rx because I thought, "What?! Steroids?!! No way!!!" Stupid me.
It only took one incident of incontinence to convince me to take care of the problem. I was unable to make it the 20 feet from my bed to the bathroom one morning recently. Now I'm determined.
Margaret
Welcome, my onset on MC is identical as yours. I had the flu one weekend and the D never went away after the bug ran its course. I'm currently taking 3mg/day of entocort and a bit stuck at that dose for now. I've been GF, DF, SF for about a year now. I was also EF up until a few weeks ago. I've only has three eggs in a two week period of time and am not sure if they are problematic. UPS just picked up my lab kit this afternoon for the panel C test with enterolab so I'm excited to find out the results.
It's amazing how far the distance is from one's own bedroom to the bathroom. Been in that situation many times. Definitely does not help to run.
I used to work out every morning on my total gym and Nordic track in the basement but gave it up after not being able to make it to bathroom in time. I've never regained the energy to go back to that routine but I'm still working on it!
I hope you are able to get the entocort you need. If it helps you, it's definitely a blessing when there aren't many options. It's a shame it's not readily available to those in need. Without my health insurance, I would not be able to afford it either.
It's amazing how far the distance is from one's own bedroom to the bathroom. Been in that situation many times. Definitely does not help to run.
I used to work out every morning on my total gym and Nordic track in the basement but gave it up after not being able to make it to bathroom in time. I've never regained the energy to go back to that routine but I'm still working on it!I hope you are able to get the entocort you need. If it helps you, it's definitely a blessing when there aren't many options. It's a shame it's not readily available to those in need. Without my health insurance, I would not be able to afford it either.
Hi Margaret,
Just wanted to wish you good luck with your diet changes and meds. Entocort for most seems to work pretty well. I did the Pepto route and that worked wonders. And I have to say congrats on your Enterolabs not showing an intolerance for soy as I hear that's in everything practically and harder to give up than gluten. Your diet sounds just like mine when I started out. I do eat a lot of homemade chicken/rice/veggie soup as well. It's a shame though that it has to take so long for the gut to heal. I'm still terrified to try a salad but have eaten a couple of questionable items lately (all DF/GF), mainly high sugar sweets. I think I will continue to hold off on those till I heal more. I only had a slight reaction. Just a reminder to me that sugar and fiber still aren't my friends.
Take care,
Terri
Just wanted to wish you good luck with your diet changes and meds. Entocort for most seems to work pretty well. I did the Pepto route and that worked wonders. And I have to say congrats on your Enterolabs not showing an intolerance for soy as I hear that's in everything practically and harder to give up than gluten. Your diet sounds just like mine when I started out. I do eat a lot of homemade chicken/rice/veggie soup as well. It's a shame though that it has to take so long for the gut to heal. I'm still terrified to try a salad but have eaten a couple of questionable items lately (all DF/GF), mainly high sugar sweets. I think I will continue to hold off on those till I heal more. I only had a slight reaction. Just a reminder to me that sugar and fiber still aren't my friends.
Take care,
Terri
Diagnosed with Lymphocytic Colitis in July, 2012 then with Celiac in November, 2012.
I am so glad I saw this thread. My insurance has changed, or something happened. Well, it's kind of complicated--one of those health savings plans with x funds, then we have a deductible, then after that amount is met, we pay like 20% of all medical bills. Anyway, went to get my months supply of my meds, and they told me it was over $1,000! So, I asked if I could buy two days worth and am frantically calling my GI to see if there was a cheaper option. I must admit, I am a bit freaked out about ordering meds overseas, and my husband might veto the idea, but I really can't swallow spending $1000 a month!
Tex, what other options, medicine wise, are there? I'm not sure why, but the Pepto and diet alone doesn't seem to cut it for me.
Tex, what other options, medicine wise, are there? I'm not sure why, but the Pepto and diet alone doesn't seem to cut it for me.
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rivendweller
- Posts: 11
- Joined: Mon Oct 17, 2011 5:32 pm
- Location: Glencoe, California
Hi, Jennifer:
I just ordered a 90 day supply of budesonide from the India pharmacy, and feel comfortable with the transaction. I paid with e-check. If Tex says it's safe, that's good enough for me. For some reason, Pepto does not work for me either.
@ Terri: Thanks for the encouragement! I am relieved that soy did not show up as a sensitivity, too. I'm being super careful, though, in these beginning stages of my healing process. I do not plan to re-introduce soy until down the road a ways.
Margaret
I just ordered a 90 day supply of budesonide from the India pharmacy, and feel comfortable with the transaction. I paid with e-check. If Tex says it's safe, that's good enough for me. For some reason, Pepto does not work for me either.
@ Terri: Thanks for the encouragement! I am relieved that soy did not show up as a sensitivity, too. I'm being super careful, though, in these beginning stages of my healing process. I do not plan to re-introduce soy until down the road a ways.
Margaret
Jennifer,
If you don't want to order from India, you can order the same drugs from Canada. The only difference is that they require a prescription in Canada (prescriptions written by U. S. doctors are worthless outside the borders of the U. S., so I guess that's a feel-good requirement), and they mark up the price of the drugs (roughly 40%, if I remember correctly).
I'm not aware of any other options for low cost budesonide. The prices in this country are just plain highway robbery. Before AstraZeneca (the manufacturers of budesonide and Entocort EC) sold exclusive merchandising rights for the drug to Prometheus Laboratories, they offered an assistance program for people who did not have insurance. The program made the drug available to qualified patients at a much lower price (and the price of budesonide back then was only a fraction of the cost today). That program had to be terminated after Prometheus acquired all rights, of course, and Prometheus has never offered a patient assistance program of any kind, that I am aware of. All that Prometheus has done is to continue to jack up the price of Entocort and their version of generic budesonide.
AstraZeneca manufactures a generic version of Entocort EC that is identical in every way to the branded product, except that the packaging is changed. Therefore, the generic budesonide manufactured by AstraZeneca has the same inactive ingredients as Entocort EC. (If I recall correctly, it even has the "Entocort" logo stamped on each capsule.) There is another generic brand available in this country (manufactured by another company) that has different inactive ingredients.
As far as other options, if you happen to have a copy of my book, all that info is listed in chapter 4. If not, briefly, the only other practical anti-inflammatory drugs available for treating MC are based on the active ingredient mesalamine. They include Asacol, Asacol HD, Pentasa, Colasal, Apriso, Lialda, Rowasa, etc., and of course, the generic melalamine. Unfortunately, since mesalamine is a derivative of salicylic acid, that makes it kin to NSAIDs, and these drugs can cause the same inflammatory response as NSAIDs, for a certain percentage of people who have an IBD (including MC). They are usually slower to bring remission than budesonide, and they seem to have a lower level of overall effectiveness, but they are probably the second choice, (based on effectiveness) after corticosteroids, provided that you're not one of the many people for whom NSAIDs trigger an MC reaction.
After that, the next level of treatment would be any of the immune system suppressants, including Imuran, methotrexate, Anti-TNF drugs, etc. Those are pretty big guns, though, with serious side effect risks, and should only be considered as a treatment for MC when all else fails, and the patient doesn't mind taking relatively high-risk drugs.
Tex
If you don't want to order from India, you can order the same drugs from Canada. The only difference is that they require a prescription in Canada (prescriptions written by U. S. doctors are worthless outside the borders of the U. S., so I guess that's a feel-good requirement), and they mark up the price of the drugs (roughly 40%, if I remember correctly).
I'm not aware of any other options for low cost budesonide. The prices in this country are just plain highway robbery. Before AstraZeneca (the manufacturers of budesonide and Entocort EC) sold exclusive merchandising rights for the drug to Prometheus Laboratories, they offered an assistance program for people who did not have insurance. The program made the drug available to qualified patients at a much lower price (and the price of budesonide back then was only a fraction of the cost today). That program had to be terminated after Prometheus acquired all rights, of course, and Prometheus has never offered a patient assistance program of any kind, that I am aware of. All that Prometheus has done is to continue to jack up the price of Entocort and their version of generic budesonide.
AstraZeneca manufactures a generic version of Entocort EC that is identical in every way to the branded product, except that the packaging is changed. Therefore, the generic budesonide manufactured by AstraZeneca has the same inactive ingredients as Entocort EC. (If I recall correctly, it even has the "Entocort" logo stamped on each capsule.) There is another generic brand available in this country (manufactured by another company) that has different inactive ingredients.
As far as other options, if you happen to have a copy of my book, all that info is listed in chapter 4. If not, briefly, the only other practical anti-inflammatory drugs available for treating MC are based on the active ingredient mesalamine. They include Asacol, Asacol HD, Pentasa, Colasal, Apriso, Lialda, Rowasa, etc., and of course, the generic melalamine. Unfortunately, since mesalamine is a derivative of salicylic acid, that makes it kin to NSAIDs, and these drugs can cause the same inflammatory response as NSAIDs, for a certain percentage of people who have an IBD (including MC). They are usually slower to bring remission than budesonide, and they seem to have a lower level of overall effectiveness, but they are probably the second choice, (based on effectiveness) after corticosteroids, provided that you're not one of the many people for whom NSAIDs trigger an MC reaction.
After that, the next level of treatment would be any of the immune system suppressants, including Imuran, methotrexate, Anti-TNF drugs, etc. Those are pretty big guns, though, with serious side effect risks, and should only be considered as a treatment for MC when all else fails, and the patient doesn't mind taking relatively high-risk drugs.
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.
@ Margaret....good idea to wait on the soy. I've cut down on it but probably still ingest some at one point or another.
@Leah....thanks so much. I will have to try a mango as well. Can you believe I've never even eaten them?
Terri
@Leah....thanks so much. I will have to try a mango as well. Can you believe I've never even eaten them?
Terri
Diagnosed with Lymphocytic Colitis in July, 2012 then with Celiac in November, 2012.