Hello all, I will be flying across country in 5 weeks and then driving back across. I have been trying to get into remission via diet changes alone and, a year + into it, haven't had success. I need the WD, 10-20x/day, to stop and in a hurry. Thoughts on the best (likely) option of medicine to try? I understand that a medicine that may work for one may not with another......
Thanks y'all!
I need a miracle, or some good meds!
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Well, you have a choice of Imodium (which can postpone bowel movements and is very safe, but will not bring remission), the Pepto treatment (slightly more risk of side effects, such as tinnitus, but should bring remission within two weeks), or budesonide (which should work within a few days, but carries the risk of more side effects). If you choose budesonide, start with a full dose, but you should be able to taper to a lower dose in much less time than the labeled dose suggests, since you've been on the diet for so long. Reduce the dose at the first signs of constipation.
Tex
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.
Yes — 3 capsules each day, taken all at one time, first thing in the morning (for at least a few days). After that you might be able to taper the dose. But let your body tell you when to taper.
Tex
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.
Tex, maintaining a low profile is the safest thing to do right now! Virginia is doing a slow open starting yesterday, I hope we don’t see cases of COVID19 spike.....
What is a typical course length for budesonide?
Brandy, thank you. I have a consultation appt with my Dr on Monday, I’m hopeful!
Is budesonide super expensive stuff? I remember my GI prescribed something upon diagnosis that was ridiculously expensive.
What is a typical course length for budesonide?
Brandy, thank you. I have a consultation appt with my Dr on Monday, I’m hopeful!
Is budesonide super expensive stuff? I remember my GI prescribed something upon diagnosis that was ridiculously expensive.
Karen
Karen,
The labeled treatment and the treatment most doctors prescribe is 90 days (30 days at 9 mg, 30 days at 6 mg, and 30 days at 3 mg), but most members here extend that tapering process much farther (for their initial treatment), so that they complete a treatment in about 6 months or more. This minimizes the chances of relapse. The extended tapering time allows the gut sufficient time to heal. Without the diet changes, and without the extended taper, the relapse rate is about 85 %, according to published research. As I mentioned though, you may not need to take it as long because you have already been on the diet for a relatively long time.
Budesonide is ridiculously expensive here in the U.S. The rest of the world pays less, but prices are different all over the world depending on the deal that the respective governments have with the pharmacetical companies. Our government chooses to allow the pharmaceutical companies to rip off residents of the U.S. with asinine prices for drugs. Many members here who have no insurance, or insurance with a high copay, order their budesonide from the following website in India. It appears to be the cheapest place in the world to buy quality budesonide. Delivery is slower now (due to the Covid-19 effects on overseas shipping), but this company seems to be very reliable and provides good service at a fair price. Compared with U.S. prices, their prices are pennies on the dollar, and the product is just as good as the stuff sold here in the States. Don't order more than a 3-month supply at one time (270 capsules) to avoid the shipment being confiscated by U.S. Customs agents. Customs considers that larger shipments might be going to drug dealers.
https://www.alldaychemist.com/budez-cr.html
Tex
The labeled treatment and the treatment most doctors prescribe is 90 days (30 days at 9 mg, 30 days at 6 mg, and 30 days at 3 mg), but most members here extend that tapering process much farther (for their initial treatment), so that they complete a treatment in about 6 months or more. This minimizes the chances of relapse. The extended tapering time allows the gut sufficient time to heal. Without the diet changes, and without the extended taper, the relapse rate is about 85 %, according to published research. As I mentioned though, you may not need to take it as long because you have already been on the diet for a relatively long time.
Budesonide is ridiculously expensive here in the U.S. The rest of the world pays less, but prices are different all over the world depending on the deal that the respective governments have with the pharmacetical companies. Our government chooses to allow the pharmaceutical companies to rip off residents of the U.S. with asinine prices for drugs. Many members here who have no insurance, or insurance with a high copay, order their budesonide from the following website in India. It appears to be the cheapest place in the world to buy quality budesonide. Delivery is slower now (due to the Covid-19 effects on overseas shipping), but this company seems to be very reliable and provides good service at a fair price. Compared with U.S. prices, their prices are pennies on the dollar, and the product is just as good as the stuff sold here in the States. Don't order more than a 3-month supply at one time (270 capsules) to avoid the shipment being confiscated by U.S. Customs agents. Customs considers that larger shipments might be going to drug dealers.
https://www.alldaychemist.com/budez-cr.html
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 Tex. I did go to their website and the price seems pretty reasonable, unfortunately we delivery is currently 4-6 weeks! I did find a coupon code that I can use locally (58% discount)so I may need to pay more initially so I can get a few weeks in before my trip.
What might be the criteria to meet to know if I will be able to taper in less than the 6 months?
What might be the criteria to meet to know if I will be able to taper in less than the 6 months?
Karen
Hi Karen,
If you want the budesonide quickly, you probably have to get it in this country. I have ordered from all day chemist 3 times now. The first two times I got it within 2 weeks. However, the 3rd order I still have not received after a couple of months. They claim that India is under lock-down due to coronavirus. So are other countries, and it is not only difficult to process it in India, but also hard to get it out of their country.
I realized that if I needed to continue the med, I had to see my GI and get a script. He asked me about where I had ordered it before, and suggested that due to the price differential, I should continue to get it from all day chemist. I discussed with him that I thought I may have to take it indefinitely. He agreed that I could, but suggested that I try to cut the dose to one pill every other day (just like you suggested Tex:), and then just stay on it. I have been on 3 mg a day for half a year now, and it works great, so I'm not yet ready to start tapering.
The good news for me is that my insurance coverage when getting it here picks up most of the cost, but it is still twice as much as all day chemist. My GI wrote me a script for 12 months (he is really great!!!). I had to pay $40 for 30 pills, which is a month's supply for me. I can live with this, but still waiting for my order from all day chemist.
Best of luck to you - I know just how awful it is to deal with the big D.
Love,
Kari
If you want the budesonide quickly, you probably have to get it in this country. I have ordered from all day chemist 3 times now. The first two times I got it within 2 weeks. However, the 3rd order I still have not received after a couple of months. They claim that India is under lock-down due to coronavirus. So are other countries, and it is not only difficult to process it in India, but also hard to get it out of their country.
I realized that if I needed to continue the med, I had to see my GI and get a script. He asked me about where I had ordered it before, and suggested that due to the price differential, I should continue to get it from all day chemist. I discussed with him that I thought I may have to take it indefinitely. He agreed that I could, but suggested that I try to cut the dose to one pill every other day (just like you suggested Tex:), and then just stay on it. I have been on 3 mg a day for half a year now, and it works great, so I'm not yet ready to start tapering.
The good news for me is that my insurance coverage when getting it here picks up most of the cost, but it is still twice as much as all day chemist. My GI wrote me a script for 12 months (he is really great!!!). I had to pay $40 for 30 pills, which is a month's supply for me. I can live with this, but still waiting for my order from all day chemist.
Best of luck to you - I know just how awful it is to deal with the big D.
Love,
Kari
"My mouth waters whenever I pass a bakery shop and sniff the aroma of fresh bread, but I am also grateful simply to be alive and sniffing." Dr. Bernstein
Karen,
I see by Kari's post that deliveries from India are really slow now, so I totally agree with her that you'll need to find a local source (at least initially). Thanks for that update, Kari.
As far as what to look for as a marker for when to lower the dose, at the very least, you should have had good solid (normal) bowel movements for at least a week or so. Ideally, you'll be seeing some signs of constipation. Definitely lower the dose when you see signs of constipation, otherwise, don't be in a big hurry to lower the dose until it feels "right". Feeling "right" means that digestive issues caused by MC should be resolved and you're generally feeling good. The fatigue and brain fog caused by MC can take a year or two to completely resolve (for most of us), but otherwise you should be feeling good. I can't tell you how long that will take because we're all different, so we all respond somewhat differently to the diet and to budesonide.
You might want to stay on a low dose (or whatever you're using at the time) of budesonide until you're back home from that trip, because the budesonide should (provided that you respond to it) mask the stress caused by the trip and prevent it from causing a relapse. Budesonide makes a good insurance policy while traveling, because it will help to cover problems such as cross-contamination of meals at unfamiliar restaurants, etc.
Tex
I see by Kari's post that deliveries from India are really slow now, so I totally agree with her that you'll need to find a local source (at least initially). Thanks for that update, Kari.
As far as what to look for as a marker for when to lower the dose, at the very least, you should have had good solid (normal) bowel movements for at least a week or so. Ideally, you'll be seeing some signs of constipation. Definitely lower the dose when you see signs of constipation, otherwise, don't be in a big hurry to lower the dose until it feels "right". Feeling "right" means that digestive issues caused by MC should be resolved and you're generally feeling good. The fatigue and brain fog caused by MC can take a year or two to completely resolve (for most of us), but otherwise you should be feeling good. I can't tell you how long that will take because we're all different, so we all respond somewhat differently to the diet and to budesonide.
You might want to stay on a low dose (or whatever you're using at the time) of budesonide until you're back home from that trip, because the budesonide should (provided that you respond to it) mask the stress caused by the trip and prevent it from causing a relapse. Budesonide makes a good insurance policy while traveling, because it will help to cover problems such as cross-contamination of meals at unfamiliar restaurants, etc.
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 Kari, Tex and Brandi.
I’m am at my Dr’s office now and she is not comfortable prescribing the meds and wants me to go to see a GI. UGH!!! And, even if she was semi comfortable she would only do a short course, like a week. Can anyone provide a link that I can show the GI (if need be) to validate the need for a longer course??
I’m so frustrated right now!
I’m am at my Dr’s office now and she is not comfortable prescribing the meds and wants me to go to see a GI. UGH!!! And, even if she was semi comfortable she would only do a short course, like a week. Can anyone provide a link that I can show the GI (if need be) to validate the need for a longer course??
I’m so frustrated right now!
Karen