Hi everyone,
I'm not sure if you will remember me from a few months ago or not. Since I last posted I have had another colonoscopy and the doctor found that I am having a flare up of colitis. I had been taking Asacol but the problems were only alleviated a bit so I am now on a tapering round of prednisone. I have to say the first week on it was great. I had no gut pain or other issues and could actually just focus on work, friends, my animals and just enjoy life. This week I have noticed a return of the very bad pain and cramps at night and last night actually got quite sick sfter dinner. I am feeling very discouraged. Should I call my MD or wait until I finish the taper next week? It gets so confusing to me because I don't know if its the colitis or maybe I just caught a bug of some sort. How do you handle that?
looking for support and suggestions
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
I agree with everything Erin said, it's always best to check with your doctor about any medications that he/she prescribed, if the treatment is not working correctly. You didn't say how long you've been taking Prednisone, or what your starting dose was, but if it was a low dose, and a short treatment program, it may have simply been an inadequate regimen, and only resolved the symptoms for a while without allowing sufficient time for your gut to heal.
On the other hand, if it was for a high dose, and/or more than a few weeks of treatment, you may be having withdrawal symptoms. And, of course, as Erin mentioned, since the corticosteroids suppress the immune system, you may have picked up a virus or a bacterial infection of some sort.
If you are no longer taking the Asacol, (or some other maintenance medication), it is highly unlikely that you will be able to maintain remission after the Prednisone is out of your system, (and, in fact, the dose you are on at this point may be insufficient to sustain remission). All but a very few of us have to either take a maintenance dose of some medication, (such as Entocort, or Asacol), or watch our diets very carefully, in order to maintain remission, in the long run.
For some of us, with persistent symptoms, diet modifications, (in addition to meds), may be necessary to maintain remission, though it is highly unlikely that your GI doc will agree with that. Still, you should make him/her aware that you are having problems with your current treatment.
Tex
On the other hand, if it was for a high dose, and/or more than a few weeks of treatment, you may be having withdrawal symptoms. And, of course, as Erin mentioned, since the corticosteroids suppress the immune system, you may have picked up a virus or a bacterial infection of some sort.
If you are no longer taking the Asacol, (or some other maintenance medication), it is highly unlikely that you will be able to maintain remission after the Prednisone is out of your system, (and, in fact, the dose you are on at this point may be insufficient to sustain remission). All but a very few of us have to either take a maintenance dose of some medication, (such as Entocort, or Asacol), or watch our diets very carefully, in order to maintain remission, in the long run.
For some of us, with persistent symptoms, diet modifications, (in addition to meds), may be necessary to maintain remission, though it is highly unlikely that your GI doc will agree with that. Still, you should make him/her aware that you are having problems with your current treatment.
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.
Thanks for the quick response! I am still taking the Asacol. I started the Prednisone on March 8th at 40 mgs. I am now on 15 mg. I did go ahead and call my doctor and should hear back from him this afternoon. I am glad you mentioned diet. This is something I have not really focused on and I wonder if I could see some improvement with some changes. I guess a food diary may help. I sure wish there were a nice magic cure for this!
Kitty
Hi Kitty,
Wow that seems like a bit of a drastic taper in a short amount of time. I am currently on Pred for UC and my doc says the norm for prednisone to treat UC (not sure if you have UC or MC, but I don't think it matters) is to take your initial 40mg for 2 weeks, and then taper down 5mg each week after that while on Asacol for maintenance. I will be curious what he says when he calls you back.
Hope you are feeling a little better today at least.
Wow that seems like a bit of a drastic taper in a short amount of time. I am currently on Pred for UC and my doc says the norm for prednisone to treat UC (not sure if you have UC or MC, but I don't think it matters) is to take your initial 40mg for 2 weeks, and then taper down 5mg each week after that while on Asacol for maintenance. I will be curious what he says when he calls you back.
Hope you are feeling a little better today at least.
Diagnosed with MC on 1/8/2008 after 7 months of flare. 2nd colonoscopy and new diagnosis of UC on 3/11/2008.
Thanks Erin, I am feeling better today. I am so glad you wrote about the Prednisone. My gut instinct is that the return of my pain and symptoms is due to the decrese in the Prednisone. I was doing so much better at the higher dose. (This started sat. when I went down to 20 mg.) I am pretty sure I have MC. Although I have to admit when his nurse called with the biopsy results I just assumed it was still the same MC I had two years ago. I'll be sure to ask when she calls back. How are you? Has the Prednison helped you with the UC?
Kitty
To be honest, i am feeling great on the prednisone, i am just ending my first week of the main dose but i have seen such a big turn around it has been a long time coming (I have been in a flare since July 07). I actually have to call my doc tomorrow to give him an update on how i am doing. I went through the Asacol and Entocort without much help before the pred so i know how frustrating it is to treat this disease.
Let us know when you hear. I hope he knows what it is right away and i am glad you are feeling better today.
Let us know when you hear. I hope he knows what it is right away and i am glad you are feeling better today.
Diagnosed with MC on 1/8/2008 after 7 months of flare. 2nd colonoscopy and new diagnosis of UC on 3/11/2008.
Hi Kitty,
Again, I have to agree with Erin, (and with your own suspicions), that your treatment program may not be adequate. You are only on your tenth day of treatment, and yet you're already down to 15 mg. I could see how that might have worked if you had been started at 80 or even 60 mg, but starting at 40 mg, (with no residual corticosteroids in your system from any other treatment), probably didn't offer enough of a buildup to provide any "carryover" effects, once the dosage got down to the 20 mg level.
If you had been taking Entocort, instead of Asacol, for example, that might have worked, but Asacol is an ASA-5 med, not a corticosteroid. Your doc may have assumed that the Asacol only needed a little help, to bring your symptoms under control, but I don't think it logically follows that the Prednisone would work that way. These are two different types of meds that work in totally different ways, on a cellular basis, so I don't think that it is logical to assume that the Asacol will help to make the Prednisone more effective, and vice versa.
Tex
Again, I have to agree with Erin, (and with your own suspicions), that your treatment program may not be adequate. You are only on your tenth day of treatment, and yet you're already down to 15 mg. I could see how that might have worked if you had been started at 80 or even 60 mg, but starting at 40 mg, (with no residual corticosteroids in your system from any other treatment), probably didn't offer enough of a buildup to provide any "carryover" effects, once the dosage got down to the 20 mg level.
If you had been taking Entocort, instead of Asacol, for example, that might have worked, but Asacol is an ASA-5 med, not a corticosteroid. Your doc may have assumed that the Asacol only needed a little help, to bring your symptoms under control, but I don't think it logically follows that the Prednisone would work that way. These are two different types of meds that work in totally different ways, on a cellular basis, so I don't think that it is logical to assume that the Asacol will help to make the Prednisone more effective, and vice versa.
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.
Hi Tex and Erin,
I heard back from the very sweet nurse at my doctor' s office. We are going back to 30 mg for a week and then try the taper again. She said to call if I have symptoms. I did feel very good on the 40 and then the 30 so I am hoping this will do the trick. I really appreciate your talking with me today. I tend to try to handle this on my own it was nice to have your input. You guys and the doctor were so helpful. Erin, I am happy you are feeling good! Thanks again.
I heard back from the very sweet nurse at my doctor' s office. We are going back to 30 mg for a week and then try the taper again. She said to call if I have symptoms. I did feel very good on the 40 and then the 30 so I am hoping this will do the trick. I really appreciate your talking with me today. I tend to try to handle this on my own it was nice to have your input. You guys and the doctor were so helpful. Erin, I am happy you are feeling good! Thanks again.
Kitty
Hi Kitty
Only just picked up your post and Erin has said what I would have to you, tapering too quickly off the pred. I was on it for 6 weeks before I went onto Entocort and so far think it has really done the trick this time. Just wanted to wish you well and hope things improve for you soon with the higher dose. x
PS Erin so happy to see you are feeling better
Only just picked up your post and Erin has said what I would have to you, tapering too quickly off the pred. I was on it for 6 weeks before I went onto Entocort and so far think it has really done the trick this time. Just wanted to wish you well and hope things improve for you soon with the higher dose. x
PS Erin so happy to see you are feeling better
Hi Mini,
thank you! I am feeling such a difference on the prednisone (As much as i dreaded going on it, it really hasn't been too bad side effects wise!). I have to call the doc today with an update. The good news is at least my weight has stablized which is nice. I would say i am 80% there. So your doctor put you back on the Entocort when tapering instead of Asacol? How long will you remain on Entocort?
thank you! I am feeling such a difference on the prednisone (As much as i dreaded going on it, it really hasn't been too bad side effects wise!). I have to call the doc today with an update. The good news is at least my weight has stablized which is nice. I would say i am 80% there. So your doctor put you back on the Entocort when tapering instead of Asacol? How long will you remain on Entocort?
Diagnosed with MC on 1/8/2008 after 7 months of flare. 2nd colonoscopy and new diagnosis of UC on 3/11/2008.
Hi and thanks for the well wishes! I just took my 30 mg of Prednisone so I am hoping for the best. He called in a whole bunch of it for me saying that we may find I need to take a good bit of it for a while depending on how I react to the taper. Mini I am happy to hear it helped you. I hope I have the same results! It gives me lots of hope to hear from you about your experiences. I am also trying 4-5 very small meals a day to see if that helps. Do you guys eat this way? Anyhow, we are looking forward to going to see my mother in law this weekend so I hope I am doing better. She is recovering from a mastectomy and we have not seen her since the surgery. She is doing great considering all she went through. Again, thanks to all of you. I was feeling rather discouraged and alone yesterday when i wrote. You really pulled me out of that.
Kitty
Hi Kitty,
Glad to hear you sounding more upbeat today. I know how 'down' you can get with this rollercoaster ride and have been there myself. This board has been so helpful to me and i am glad you turned to it yesterday!
Sounds like the doctor has a good plan for you and i bet you will be feeling good again if not today, tomorrow!
Yes, I eat 5 small meals a day. I do find if i miss one, or eat too big i still feel 'uncomfortable' and get that 'hmmm, is something going to go wrong?' feeling so i think your on the right track!
Glad to hear you sounding more upbeat today. I know how 'down' you can get with this rollercoaster ride and have been there myself. This board has been so helpful to me and i am glad you turned to it yesterday!
Sounds like the doctor has a good plan for you and i bet you will be feeling good again if not today, tomorrow!
Yes, I eat 5 small meals a day. I do find if i miss one, or eat too big i still feel 'uncomfortable' and get that 'hmmm, is something going to go wrong?' feeling so i think your on the right track!
Diagnosed with MC on 1/8/2008 after 7 months of flare. 2nd colonoscopy and new diagnosis of UC on 3/11/2008.