I have been on Budesonide now for 8 weeks and starting in 2 days I will have 4 more weeks to go with 1 capsule daily.
1. Has anyone had many side effects throughout the duration of taking the medication? I have had headaches, diarrhea (like I need more of that), stomach pain, nausea, feeling tired and weak and major gas. At this point it is difficult for me to determine if these are side effects or if there is something else wrong with me. Last week up until yesterday I felt like I had finally crossed over and that the medication was helping me. Then yesterday, the same cramping gut, gas, watery, runny diarrhea, urgency, shaky, etc. hit me to the point I felt like I did before I started the medication! So last night and today I have eaten basically nothing but oatmeal for breakfast, applesauce, rice, broth and chicken and that's it. Feeling only slightly better now but still not right. I am discouraged. I don't know what to eat and I am afraid of losing too much weight and I do not need to lose weight.
2. Has anyone else experienced these same issues when taking it? I am starting to feel like I am not going to be in remission after the next 4 weeks ends. Then what? Has anyone had to try something else because they couldn't reach remission or stay in remission? If so, what was it and did it work?
I was diagnosed with MC in 2017 and at that time was told I had a mild version and that I should take 2 Pepto-Bismol tablets per day. Which I did for a long time and I was able to generally knock out a flare up in a couple or three days. This time around has been totally different and has lasted way too long which was why the doctor recommended trying budesonide.
Thank you for any insight anyone can offer me.
Budesonide and side effects
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Re: Budesonide and side effects
Based on the past experiences shared by most members here who have taken budesonide, it sounds as though you are either allergic to budesonide (or intolerant of it), or it is providing virtually no treatment benefits. I'm assuming you're avoiding gluten. If not, that's why you're having the symptoms, because budesonide cannot overcome the inflammation caused by gluten.
I hate to be the bearer of bad news, but virtually all of us react to oatmeal (the avenin in oats is similar to gluten in wheat, although it's a weaker protein), and some of us react to chicken. A few of us react to rice. There are much safer diet choices available. Save proteins include turkey, lamb, cabrito (kid goat) , duck, goose, rabbit, venison, and other wild type meats. Shellfish are safe unless you had a previous allergy to shellfish before you developed MC. Certain vegetables are much safer sources of carbs than grains. Carrots, cauliflower, sweet potatoes, yams, rutabagas, turnips, and green beans are usually safe for most of us.
I hope this helps.
Tex
I hate to be the bearer of bad news, but virtually all of us react to oatmeal (the avenin in oats is similar to gluten in wheat, although it's a weaker protein), and some of us react to chicken. A few of us react to rice. There are much safer diet choices available. Save proteins include turkey, lamb, cabrito (kid goat) , duck, goose, rabbit, venison, and other wild type meats. Shellfish are safe unless you had a previous allergy to shellfish before you developed MC. Certain vegetables are much safer sources of carbs than grains. Carrots, cauliflower, sweet potatoes, yams, rutabagas, turnips, and green beans are usually safe for most of us.
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.
Re: Budesonide and side effects
Tex,
Thank you for the advice. Yes I have been following a gluten free diet for quite some time. I also eat gluten free oats, quinoa, tuna, salmon all of which are my staples. I do eat yogurt and tofu as well and other dairy. I do not eat any red meat or wild meat. I am prediabetic (low range) and have worked with a dietician now for going on 2 years. She has helped me tremendously and my labs have been perfect the past year. However, that diet is how I started eating more whole grains and protein and I have felt better for it. So now I am just confused. I am going to book an appointment with her in the next couple of weeks and ask her to help me figure out what I CAN eat.
I am on 1 budesonide capsule now for the next 4 weeks and then 2 weeks before I see the doctor. He said when I started the budesonide that if the medication doesn't push me into remission we will need to think about a colonoscopy. My last one was in 2017 and that was when I was diagnosed with MC. At that time there were no polyps so I was advised to come back in 10 years. That said, my paternal grandmother passed from colon cancer so I will not argue with the doctor if he thinks it's best.
I haven't looked into the Entero Labs option but I need to read up on that. It sounds like it is expensive but at least it would help me figure out what I can eat. Any advice you can offer is always welcome.
Thank you for the advice. Yes I have been following a gluten free diet for quite some time. I also eat gluten free oats, quinoa, tuna, salmon all of which are my staples. I do eat yogurt and tofu as well and other dairy. I do not eat any red meat or wild meat. I am prediabetic (low range) and have worked with a dietician now for going on 2 years. She has helped me tremendously and my labs have been perfect the past year. However, that diet is how I started eating more whole grains and protein and I have felt better for it. So now I am just confused. I am going to book an appointment with her in the next couple of weeks and ask her to help me figure out what I CAN eat.
I am on 1 budesonide capsule now for the next 4 weeks and then 2 weeks before I see the doctor. He said when I started the budesonide that if the medication doesn't push me into remission we will need to think about a colonoscopy. My last one was in 2017 and that was when I was diagnosed with MC. At that time there were no polyps so I was advised to come back in 10 years. That said, my paternal grandmother passed from colon cancer so I will not argue with the doctor if he thinks it's best.
I haven't looked into the Entero Labs option but I need to read up on that. It sounds like it is expensive but at least it would help me figure out what I can eat. Any advice you can offer is always welcome.
Re: Budesonide and side effects
Hello Sharv,
I had problems with oatmeal even before my initial flare started. Most people on this site have a reaction to dairy (including me) so the yogurt may be an issue. The tofu is fermented soy I believe, and soy can be a problem - although it's fermented in this case, so I don't know.
If you can afford it Enterolabs will reduce your guesswork. I'm glad I did it. It's helpful to search on this site and see other people's Enterolab results.
By the way, why not red meat?
John R.
I had problems with oatmeal even before my initial flare started. Most people on this site have a reaction to dairy (including me) so the yogurt may be an issue. The tofu is fermented soy I believe, and soy can be a problem - although it's fermented in this case, so I don't know.
If you can afford it Enterolabs will reduce your guesswork. I'm glad I did it. It's helpful to search on this site and see other people's Enterolab results.
By the way, why not red meat?
John R.
Re: Budesonide and side effects
Thank you John for your thoughts and advice. I need to research Enterolabs. It sounds like that is the only way to find out what my triggers are and maybe I've been eating the wrong items for years now. Ugh! I decided to stop eating red meat years ago. I tried to go vegan but found that I couldn't be 100% vegan so I started eating tuna, salmon, sometimes chicken and sometimes turkey, eggs and dairy so I believe I am in the "flexitarian" category. I grew up on a farm and had the best beef and pork all of my life but I don't think it's too great for my health and I saw too many animals slaughtered and decided it's not for me and I could get my protein from other sources. Once in a long while I will crave a hamburger but rarely. I still have reservations even about eating fish and poultry but I have to eat something and those items seem to generally agree with me.