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Hello all,
This is such an amazing group of upbeat and helpful MCers. I find it hard to be upbeat contemplating this disease, but I am trying to begin to model myself on so many of you.
I found this forum shortly after I was diagnosed with cc in early Feb. It was a stressful time! Lots of watery D. Ugh.
My symptoms started last Nov. and remained relatively mild until late Jan. - Feb. around the time I had the colonoscopy. The GI put me on Asacol which did calm things down a little but not enough and in mid March I started Entocort. By mid April, I had two unfortunate developments--the Entocort started working for me during the first week--and by week three I was C and by week 5 the C was really awful, requiring suppositories, laxatives. The GI bumped me down to 2 entocort per day.
Then I caught some kind of upper respiratory virus, and have gone through a cycle of getting better to a certain point, then falling backward. I took a course of Biaxin two weeks ago as most of it was in my head and sinuses. I still am not doing too great with this. had my sinuses xrayed--showed no infection, but the ear, nose, throat doc wanted me to take levaquin and prednisone. I am not comfortable with steroids and have worried about the effects of the entocort, but needed that relief. I said no to the prednison and am debating the levaquin. In the meantime, I'm taking lots of bioflavonoids and am making some but not huge progress.
On 2 entocort pills, the C was relieved somewhat but not really well. I recently read that sinus problems can be a side effect of Entocort. Has anyone had any experience with this?
I know I haven't taken the Entocort long enough for healing, but last week I went to 1 a day because of this sinus problem and lots of constant pressure in my ears. The PCP thinks the terrible allergy season is making all this worse.
So far, I'm having normal to slightly C bms. It's been five days on 1 pill. I know from reading Gloria's experience you can be doing great, thinking you've found remission, and then after a seemingly long time, the bms start to shift. I've ordered the Enterolab tests and should have the kit this week, and I've been gluten and dairy free since Jan. 1.
Anyway, if anyone has had a sinus problem with entocort, I'd love to hear about it.
Thank you for all the help you give everyone with mc.
Susan
New with questions
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Susan,
Welcome to our internet family. I'm afraid I can't help you with insight into any personal experience with sinus problems related to Entocort, since I've never taken it, but I have had problems with sinuses lately, something that almost never happens to me. I had an ear infection, with a lot of drainage, following a mild cold, last October, and the ear drainage problem keeps coming back. Now, with the spring allergy season almost over, here it is again, and accompanied with what seems to be sinus congestion and drainage. Maybe it's just a bad year for that sort of thing. Entocort does temporarily suppress the immune system, though, so there's a very good chance that it's contributing to the respiratory problems.
Levaquin is a member of the floroquinalone family of antibiotics, and this family of antibiotics seems to be the least likely of any of the antibiotics to cause D, when taken by a patient who has MC. In fact, for most of us, these antibiotics will usually bring temporary remission from MC symptoms.
You seem to have your MC treatment program well in hand, and hopefully, you will soon get the sinus/respiratory "bug" under control, and you should have much smoother sailing, after that. Incidentally, several of us here have alternating D and C during MC reactions, including myself, and you are not the first to have problems with C, after treatment. Reducing the dosage of Entocort, (as you did), is probably the best choice, because in the long run, you probably want to control your symptoms by diet alone, anyway. You can always bump up the Entocort dose, if you need to.
To help with the respiratory issues, (and the MC, for that matter), be sure that you are getting plenty of vitamin D3. Most of us are deficient. The newest recommendations are for 2,000 to 4,000 IUs, daily, for the general population, and for us, 4,000 to 6,000 IUs, (or more), is probably a better choice, until our intestines complete the healing process.
Feel free to ask any questions that come to mind, and please keep us posted on your progress. Again, welcome aboard.
Tex (Wayne)
Welcome to our internet family. I'm afraid I can't help you with insight into any personal experience with sinus problems related to Entocort, since I've never taken it, but I have had problems with sinuses lately, something that almost never happens to me. I had an ear infection, with a lot of drainage, following a mild cold, last October, and the ear drainage problem keeps coming back. Now, with the spring allergy season almost over, here it is again, and accompanied with what seems to be sinus congestion and drainage. Maybe it's just a bad year for that sort of thing. Entocort does temporarily suppress the immune system, though, so there's a very good chance that it's contributing to the respiratory problems.
Levaquin is a member of the floroquinalone family of antibiotics, and this family of antibiotics seems to be the least likely of any of the antibiotics to cause D, when taken by a patient who has MC. In fact, for most of us, these antibiotics will usually bring temporary remission from MC symptoms.
You seem to have your MC treatment program well in hand, and hopefully, you will soon get the sinus/respiratory "bug" under control, and you should have much smoother sailing, after that. Incidentally, several of us here have alternating D and C during MC reactions, including myself, and you are not the first to have problems with C, after treatment. Reducing the dosage of Entocort, (as you did), is probably the best choice, because in the long run, you probably want to control your symptoms by diet alone, anyway. You can always bump up the Entocort dose, if you need to.
To help with the respiratory issues, (and the MC, for that matter), be sure that you are getting plenty of vitamin D3. Most of us are deficient. The newest recommendations are for 2,000 to 4,000 IUs, daily, for the general population, and for us, 4,000 to 6,000 IUs, (or more), is probably a better choice, until our intestines complete the healing process.
Feel free to ask any questions that come to mind, and please keep us posted on your progress. Again, welcome aboard.
Tex (Wayne)
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.
Just want to say Welcome, Susan.
Sounds like you are handling things as well as possible and Tex pretty well covered everything but wanted to welcome you to the board. Glad you found us. It does help to know you aren't in it alone.
Shirley
Sounds like you are handling things as well as possible and Tex pretty well covered everything but wanted to welcome you to the board. Glad you found us. It does help to know you aren't in it alone.
Shirley
When the eagles are silent, the parrots begin to jabber"
-- Winston Churchill
-- Winston Churchill
Welcome Susan,
Entocort always helps my sinuses. 10% or so goes systemic. However I do recommend using saline for your sinuses if you aren't already. Use a neti pot or better yet they have one that squirts the saline in your sinuses, a whole cup. Works! I can keep from having to take antibiotics if I do it 4 times a day when I feel I am having a sinus infection ie: green mucus, sinus pain. Mucinex also helps thin the mucus. Also a decongestant. Antibiotics are what I think gave me this dreaded MC and so I will do anything to avoid antibiotics. If they didn't give me the MC I know for sure they exacerbated the problem.
Sorry you had to find this board, but it is the place to get support for MC. Good luck with the sinus thing.
Pat
Entocort always helps my sinuses. 10% or so goes systemic. However I do recommend using saline for your sinuses if you aren't already. Use a neti pot or better yet they have one that squirts the saline in your sinuses, a whole cup. Works! I can keep from having to take antibiotics if I do it 4 times a day when I feel I am having a sinus infection ie: green mucus, sinus pain. Mucinex also helps thin the mucus. Also a decongestant. Antibiotics are what I think gave me this dreaded MC and so I will do anything to avoid antibiotics. If they didn't give me the MC I know for sure they exacerbated the problem.
Sorry you had to find this board, but it is the place to get support for MC. Good luck with the sinus thing.
Pat
Hi Tex and Shirley,
Thanks so much for the welcome and response.
Tex, Sorry to hear about your ear/sinus problem. Seems so crazy when you normally have no issues with allergies. Many years, allergies don't bother me at all, and then there's a "bad" year. Seems a lot of people are really bothered in my part of the world right now---lots of oak pollen here. I'm hoping this will clear soon.
Susan
Thanks so much for the welcome and response.
Tex, Sorry to hear about your ear/sinus problem. Seems so crazy when you normally have no issues with allergies. Many years, allergies don't bother me at all, and then there's a "bad" year. Seems a lot of people are really bothered in my part of the world right now---lots of oak pollen here. I'm hoping this will clear soon.
Susan
Hi Pat
I've been irrigating my sinuses with a syringe but started neti pot about 2 weeks ago. I've only been doing 2 times a day and will increase to 3 or 4.
I've been reading about your struggling with mc and see the list of all the intolerances. I can only imagine it has to be so hard. Until Jan 1 I just kept on eating everything, and then I decided to cut gluten and dairy and that felt like a loss and a struggle. I can't imagine what it's like to know you have a fructose allergy and having to eliminate fruit. I only hope you can reintroduce some of the lower fructose fruit after you feel you are really better.
I look to you and so many others for guidance and encouragement through this process--I know it's going to be really hard before it gets better. I was keeping a food journal before the respiratory thing, but I felt so sick for a few weeks, I gave up. I'm now back to it. When I was on the full dose of entocort I could eat anything, I felt, because of the severe constipation event though I didn't eat gluten or dairy.
thanks, Pat.
Susan
I've been irrigating my sinuses with a syringe but started neti pot about 2 weeks ago. I've only been doing 2 times a day and will increase to 3 or 4.
I've been reading about your struggling with mc and see the list of all the intolerances. I can only imagine it has to be so hard. Until Jan 1 I just kept on eating everything, and then I decided to cut gluten and dairy and that felt like a loss and a struggle. I can't imagine what it's like to know you have a fructose allergy and having to eliminate fruit. I only hope you can reintroduce some of the lower fructose fruit after you feel you are really better.
I look to you and so many others for guidance and encouragement through this process--I know it's going to be really hard before it gets better. I was keeping a food journal before the respiratory thing, but I felt so sick for a few weeks, I gave up. I'm now back to it. When I was on the full dose of entocort I could eat anything, I felt, because of the severe constipation event though I didn't eat gluten or dairy.
thanks, Pat.
Susan
You're Welcome, Susan.
I have received so much from this board it is the least I can do to try to help someone else.
I have never been successful keeping a diary. Many on here have been able and I have envied them. I need to keep trying as I think it helps to determine the irritants. I miss fruit the most.
Hang in there and stay the course. You may have to eliminate more things but most on here said that they have been able to add back some things after remission. I look forward to that!
Pat
I have received so much from this board it is the least I can do to try to help someone else.
I have never been successful keeping a diary. Many on here have been able and I have envied them. I need to keep trying as I think it helps to determine the irritants. I miss fruit the most.
Hang in there and stay the course. You may have to eliminate more things but most on here said that they have been able to add back some things after remission. I look forward to that!
Pat