Hi,
I tried several probiotics (including kefir), none of them worked (made me worse actually).
Only one that seems to help (big time actually) is alflorex.
It's a bit expensive, but I suggest you try it if drugs don't work for you - tried budesonide without a lot of success :(
Alflorex
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh, mbeezie
Xfaxan
I was diagnosis with CC in 2016. Since that time I have managed this disease with Budesonide and diet. I have stopped taking Budesonide twice for two months. I managed to keep the diarrhea at bay for the most part but experienced lower right side and back pain, some cramps, conjunctivitis, arthritis and dizziness. When I take Budesonide, these symptoms disappear and stay at a tolerable level when I drop down to 1 pill every other day. I have not seen my doctor even for a follow up since the morning of my colonoscopy. Once a year I have seen a different nurse practitioner and she refills my prescription. This time the NP did not think she should refill the Budesonide. I explained that I had a bad summer, a fall that landed in in a leg brace with limited mobility and some weight gain and that I was taking one Budesonide a day and only had 7 pills left. She insisted that I needed to be off Budesonide but that she would give me 10 more pills so that I could gradually quit taking the Budesonide. The next day another NP called and told me that the other NP and my doctor would not give me 10 pills but were prescribing me Xfaxan for IBS. I told her that I did not have IBS nor had I ever been diagnosed with IBS. I ask if Xfaxan was prescribed for CC or IBD. Very distressed with few choices. I had 7 pills so spread those out over two weeks and stayed on a strict gluten free and lactose free, low fat diet. The Xfaxan drug is very expensive, $1700.00 with my insurance I can get it for $326.00. I called the other gastroenterology hospital group in town and they don’t usually take patiences that from the other main hospital group but that I should call that “other group” and have my records faxed to them. I explained that once I did that I would be without a doctor. That is how I left it and how I left my treatment. I don’t feel well but functional and grateful for that. I hope someone has had experience with these medications. I understand that the goal is to quit taking Budesonide altogether but it is tough to think that I do not have that wonderful drug as an option if things get too messy. Thank you.
Linda
Hi Linda,
If you can't get a refill from the gastro, I would try my GP. If that doesn't work out (or if you prefer), you can do what a lot of members here do, and order it from an overseas pharmacy. AllDayPharmacy is in India and they will sell budesoide without a prescription. They will ask you for a script, but if you don't give them one, they will send you the meds anyway (after you pay for them). They sell a generic that works just as well as the high-priced (overpriced) domestic versions, and their price is pennies on the dollar, compared with US prices. No one here has complained about the service or the product. With the holidays, though, it will take longer to get through Customs (roughly 2–3 weeks). Here's a link to the product:
https://www.alldaychemist.com/budez-cr.html
Don't order more than a three-month supply (270 capsules) at one time, because the package may be confiscated by Customs (they think larger orders may be going to a drug dealer).
Rifaximin (Xfaxan) is not likely to help. A number of members here have tried it in the past with poor results.
Tex
If you can't get a refill from the gastro, I would try my GP. If that doesn't work out (or if you prefer), you can do what a lot of members here do, and order it from an overseas pharmacy. AllDayPharmacy is in India and they will sell budesoide without a prescription. They will ask you for a script, but if you don't give them one, they will send you the meds anyway (after you pay for them). They sell a generic that works just as well as the high-priced (overpriced) domestic versions, and their price is pennies on the dollar, compared with US prices. No one here has complained about the service or the product. With the holidays, though, it will take longer to get through Customs (roughly 2–3 weeks). Here's a link to the product:
https://www.alldaychemist.com/budez-cr.html
Don't order more than a three-month supply (270 capsules) at one time, because the package may be confiscated by Customs (they think larger orders may be going to a drug dealer).
Rifaximin (Xfaxan) is not likely to help. A number of members here have tried it in the past with poor results.
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.
-
kariswalstad
- Little Blue Penguin
- Posts: 47
- Joined: Wed Oct 02, 2019 10:15 pm
- Location: Minnesota
Hi Linda, I've used both Budesonide and Rifaximin (Xfaxan), two separate times in the past 9 years. The first was right after diagnosis and the last was this past spring/summer, when my flare was out of control and affecting my entire body, not just giving me digestive symptoms. My docs said that Xfaxan was for SIBO (small intestine bacterial overgrowth) and Budesonide was for MC. Neither of them helped enough to get me into remission (either time). I wouldn't do Xfaxan again, mainly because I was infinitely weaker and sicker afterward and there was virtually no benefit. It seems Budesonide does help folks when nothing else does (and was probably what worked for me the first go-round).
The only thing that has helped is finding this forum and taking their suggestions with strict diet changes, acceptance, stress reduction, and meditation. I continue to get well-meaning advice from medical professionals to eat more fiber, whole foods, etc., which is the exact opposite of what really works! I was so confused for so long until I found these thousands of potty people who'd found their own solutions, which have been a godsend to me. It's been difficult to be patient but I am seeing improvements! I believe you will too.
The only thing that has helped is finding this forum and taking their suggestions with strict diet changes, acceptance, stress reduction, and meditation. I continue to get well-meaning advice from medical professionals to eat more fiber, whole foods, etc., which is the exact opposite of what really works! I was so confused for so long until I found these thousands of potty people who'd found their own solutions, which have been a godsend to me. It's been difficult to be patient but I am seeing improvements! I believe you will too.
Karis
There is a voice that doesn't use words. Listen. --Rumi
There is a voice that doesn't use words. Listen. --Rumi
