I guess I am getting some benifit from the 40 mg Pred and 50 mg Imuran. But I still have to take 2 Lomotil a day. So I called my doctor today; they want me to come in Fri. I just don't think the benefit is greater than the risks. My head hurts 24 hours a day too, even with Tylenol. I try to not take it but sometimes I just have to. I am getting a puffy face finally, but no weight gain and I am eating a lot. I hope and pray he comes up with a good plan B or C or whatever it is now. I am so very careful with my diet too. I gave the no grains diet the good ole college try but I was starving and it didn't seem to make any difference in the D. Meats, eggs, veggies, and some fruit just didn't give me enough calories even though I was eating every couple of hours. I have added back in rice. No rice milk. Just white rice. Thanks for letting me tell someone.
Pat
Prednisone and Imuran are the pits
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Pat,
Sorry to hear that success is still elusive. I agree, a constant headache is definitely not a good sign, and clearly, something is not cooperating, probably the Imuran.
If you're looking for extra calories, have you tried coconut milk? I used to use it in smoothies, when I was low on weight, and it's pretty rich stuff. I just used it in place of the apple cider, or water that is normally used. It's available in cans, unrefrigerated.
Tex
Sorry to hear that success is still elusive. I agree, a constant headache is definitely not a good sign, and clearly, something is not cooperating, probably the Imuran.
If you're looking for extra calories, have you tried coconut milk? I used to use it in smoothies, when I was low on weight, and it's pretty rich stuff. I just used it in place of the apple cider, or water that is normally used. It's available in cans, unrefrigerated.
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 Pat
Sorry to read you are still having a bad time, wow seems hard that you still need to take lomotil each day to help with the D! Some people who take steriods for a long time have this problem but we are talking years of use with these drugs and hence they no longer are effective as at first but, this is your first course.
For me as you know the pred worked within 48 hours it was just the side effects I could not take, moon face was not nice but, I think the moods and total lack of sleep was far too much. I can't help but think that your GI instruction of 40mg not tapering after a few weeks is a bad idea but, I am not a doctor however.
I hope they find some way to help you get some relief after all this time I know first hand how years of the D can bring you down! If your weight is causing you concern maybe you could suggest to your doctor getting some Ensure?
Hope things improve for you and keeping my fingers crossed they do x
Sorry to read you are still having a bad time, wow seems hard that you still need to take lomotil each day to help with the D! Some people who take steriods for a long time have this problem but we are talking years of use with these drugs and hence they no longer are effective as at first but, this is your first course.
For me as you know the pred worked within 48 hours it was just the side effects I could not take, moon face was not nice but, I think the moods and total lack of sleep was far too much. I can't help but think that your GI instruction of 40mg not tapering after a few weeks is a bad idea but, I am not a doctor however.
I hope they find some way to help you get some relief after all this time I know first hand how years of the D can bring you down! If your weight is causing you concern maybe you could suggest to your doctor getting some Ensure?
Hope things improve for you and keeping my fingers crossed they do x
Pat,
Sorry to hear you are not feeling well. Could it be the Imuran? I have heard it does not sit well with many people and they switch to 6MP i think its called? Hopefully the doctor can help you at your appt!
Sorry to hear you are not feeling well. Could it be the Imuran? I have heard it does not sit well with many people and they switch to 6MP i think its called? Hopefully the doctor can help you at your appt!
Diagnosed with MC on 1/8/2008 after 7 months of flare. 2nd colonoscopy and new diagnosis of UC on 3/11/2008.
Mini,
I totally agree with you that a better choice would have been to use the Prednisone for only a very short time, (a week or so), and then taper it while introducing increasing amounts of Entocort for the main treatment regimen, in order to preempt the much greater risk of adverse side effects from longer-term use of Prednisone.
We seem to have an increasing number of members who have extreme difficulty in achieving remission, even though they are using a corticosteroid, plus careful diet restriction. Either of those options should give control, and yet for some individuals, even a combination does not seem to guarantee control. In fact, for some individuals, (such as Gloria, for example), it appears to me that the corticosteroid might not be working at all, since she was apparently still reacting to miniscule amounts of gluten in rice milk, (amounts within the limits set by the Codex Alimentarius that allow for labeling a product as gluten free).
So what's going on here. I can't help but wonder if mast cells might not have something to do with this phenomenon, and yet when I research the literature, corticosteroids are shown to effectively suppress inflammation caused by the release of tryptase from mast cells. It has been suggested that tryptase released from mast cells might play a key role in the development of ulcerative colitis (UC), however, the role of protease-activated receptor 2 (PAR2), tryptase receptor, remains unclear as far as the development of UC is concerned.
There has been research done to demonstrate that the use of the tryptase inhibitor APC 2059 is safe and it has been shown to be somewhat effective in the treatment of ulcerative colitis.
http://pt.wkhealth.com/pt/re/alpt/abstr ... 28!8091!-1
Pat,
The next time you see your doctor, you might ask him for his thoughts on trying a different approach, such as something like APC 2059, just in case excessive mast cell production is the overriding problem in your case. He is probably familiar with it, if he keeps up with research being done on treatment programs for UC. All of these IBDs seem to respond to the same basic treatment regimens, even though they present somewhat differently, as far as symptoms are concerned.
Tex
P S I used to drink one or two cans of Ensure, Boost, or Encore, daily, back when I was so run down, and still trying to do physical work, however, I was never able to achieve remission while using those products. The problem with Ensure, (and similiar products), is that they have an ingredient list as long as your arm, and many of them are derived form dairy products, and other suspicious sources. For example, the ingredient list for Ensure contains: Water, sugar (sucrose), corn syrup, maltodextrin (corn), calcium caseinate, high-oleic safflower oil, canola oil, soy protein isolate, whey protein concentrate, corn oil, calcium phosphate tribasic, potassium citrate, magnesium phosphate dibasic, natural and artificial flavor, soy lecithin, sodium citrate, magnesium chloride, salt (sodium chloride), carrageenan, choline chloride, potassium chloride, ascorbic acid, ferrous sulfate, alpha-tocopheryl acetate, zinc sulfate, niacinamide, calcium pantothenate, manganese sulfate, cupric sulfate, vitamin A palmitate, thiamine chloride hydrochloride, pyridoxine hydrochloride, riboflavin, folic acid, chromium chloride, biotin, sodium molybdate, sodium selenate, potassium iodide, phylloquinone, vitamin D3 and cyanocobalamin
I totally agree with you that a better choice would have been to use the Prednisone for only a very short time, (a week or so), and then taper it while introducing increasing amounts of Entocort for the main treatment regimen, in order to preempt the much greater risk of adverse side effects from longer-term use of Prednisone.
We seem to have an increasing number of members who have extreme difficulty in achieving remission, even though they are using a corticosteroid, plus careful diet restriction. Either of those options should give control, and yet for some individuals, even a combination does not seem to guarantee control. In fact, for some individuals, (such as Gloria, for example), it appears to me that the corticosteroid might not be working at all, since she was apparently still reacting to miniscule amounts of gluten in rice milk, (amounts within the limits set by the Codex Alimentarius that allow for labeling a product as gluten free).
So what's going on here. I can't help but wonder if mast cells might not have something to do with this phenomenon, and yet when I research the literature, corticosteroids are shown to effectively suppress inflammation caused by the release of tryptase from mast cells. It has been suggested that tryptase released from mast cells might play a key role in the development of ulcerative colitis (UC), however, the role of protease-activated receptor 2 (PAR2), tryptase receptor, remains unclear as far as the development of UC is concerned.
There has been research done to demonstrate that the use of the tryptase inhibitor APC 2059 is safe and it has been shown to be somewhat effective in the treatment of ulcerative colitis.
http://pt.wkhealth.com/pt/re/alpt/abstr ... 28!8091!-1
Pat,
The next time you see your doctor, you might ask him for his thoughts on trying a different approach, such as something like APC 2059, just in case excessive mast cell production is the overriding problem in your case. He is probably familiar with it, if he keeps up with research being done on treatment programs for UC. All of these IBDs seem to respond to the same basic treatment regimens, even though they present somewhat differently, as far as symptoms are concerned.
Tex
P S I used to drink one or two cans of Ensure, Boost, or Encore, daily, back when I was so run down, and still trying to do physical work, however, I was never able to achieve remission while using those products. The problem with Ensure, (and similiar products), is that they have an ingredient list as long as your arm, and many of them are derived form dairy products, and other suspicious sources. For example, the ingredient list for Ensure contains: Water, sugar (sucrose), corn syrup, maltodextrin (corn), calcium caseinate, high-oleic safflower oil, canola oil, soy protein isolate, whey protein concentrate, corn oil, calcium phosphate tribasic, potassium citrate, magnesium phosphate dibasic, natural and artificial flavor, soy lecithin, sodium citrate, magnesium chloride, salt (sodium chloride), carrageenan, choline chloride, potassium chloride, ascorbic acid, ferrous sulfate, alpha-tocopheryl acetate, zinc sulfate, niacinamide, calcium pantothenate, manganese sulfate, cupric sulfate, vitamin A palmitate, thiamine chloride hydrochloride, pyridoxine hydrochloride, riboflavin, folic acid, chromium chloride, biotin, sodium molybdate, sodium selenate, potassium iodide, phylloquinone, vitamin D3 and cyanocobalamin
I have mast cells on my list of questions to ask tomorrow morning. I also want them to do a stool test for c-diff. Just in case. I got so much worse after taking the Neomycin last year. I know they haven't tested me for that either. I have never heard of 6MP or APC 2059. I'll ask. I did better on the Entocort Jan 07 but I was not on this diet and the doctor had me stop all immodium/lomotil while I was on it and I was on it for only 6 weeks. I would rather go back on it. I had no side effects. It just didn't help that much. It helped about as much as the immodium did.
I know I can't drink Ensure or any of those nutritional supplements. I am casein intolerant and soy intolerant. My diet is very simple and no preservatives, etc. Just fresh everything! It just goes right through me still. I am small boned so I am never going to be big but I would like to fill out my pants!
Thanks,
Pat
I know I can't drink Ensure or any of those nutritional supplements. I am casein intolerant and soy intolerant. My diet is very simple and no preservatives, etc. Just fresh everything! It just goes right through me still. I am small boned so I am never going to be big but I would like to fill out my pants!
Thanks,
Pat
Pat,
I hear you. I got down to hide and bones myself, when I was reacting regularly, and taking tests every couple of weeks. It even hurt to sit on a hard chair, because my butt had lost all of it's padding. LOL.
I agree, a test for C diff is a very good idea, especially if you haven't had one recently. If he hasn't heard of using a tryptase inhibitor, such as APC 2059, for treating UC, there's probably no point in pressing the issue, since it may still be so new that it's not yet accepted in the industry, sort of like stool testing for antibodies to pinpoint food intolerances.
Good luck tomorrow - I hope the two of you can come up with something that works, during your visit.
Tex
I hear you. I got down to hide and bones myself, when I was reacting regularly, and taking tests every couple of weeks. It even hurt to sit on a hard chair, because my butt had lost all of it's padding. LOL.
I agree, a test for C diff is a very good idea, especially if you haven't had one recently. If he hasn't heard of using a tryptase inhibitor, such as APC 2059, for treating UC, there's probably no point in pressing the issue, since it may still be so new that it's not yet accepted in the industry, sort of like stool testing for antibodies to pinpoint food intolerances.
Good luck tomorrow - I hope the two of you can come up with something that works, during your visit.
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.
I googled 6MP and APC 2059. 6MP is Purinethol and is used for UC like Imuran is used, to get people off steroids. I cannot find where APC 2059 went any further than Phase ll clinical trial. Doesn't look like the side effects of Purinethol are any better than Imuran. I'm really at the doctor's mercy. I can ask though.
Pat
Pat
