New to the board: I am still losing weight..
Question:
Many drugs that are taken orally have GI probs as side effects. Many times it’s not the drug but the route of administration that’s to blame. Debs – Hide quoted text — Show quoted text -> Any "poll" conducted in this NG is significantly biased toward those > who have failed various medical therapies and is therefore not in any > way a reflection of the IBD patient population. > I agree that this had hock poll was no scientific study…it was > however infomative none the less. I took in account that this NG may > have more patients with conditions not under control…however it was > somewhat comforting to get over 20 responses from others who also said > they had negative side effects from Asacol. Remember, at the time we > were very close to losing my daughter….my gut was telling me it was > the Asacol, but the doctor said it was highly unlikely. He strongly > advised me from taking her off the medication. Out of despiration, I > took her off and by the next morning, there was an noticable > improvement. The reintroduction to Asacol a few days later created > another downslide. We dumped the rest of the tablets down the drain. > After reading up on the side effects > (http://www.pgpharma.com/pi/US-Asacol.pdf), I found it interesting > that the side effects of Asacol were similar to the the disease itself > and this is why 5ASA intolerance may go undetected. The response from > my daughter’s GI to her worsening condition was to up the Asacol > dosage to 9 tablets a day…then as her condition worsened, he upped > the Prednisone. Once the Asacol was removed, we were able to get her > stabilized in very short time (less than 24 hours). > There is no doubt in my mind that Asacol works well for a large group > of people, but I would feel remissed if we didn’t also talk about > those cases when the conditions clearly indicated an intolerance to > 5ASA’s. > There may be others out there being 5ASA intolerant, but being > prescibed larger doses because the "odds are minimal". > Prednisone is often a very good short term solution but other > medications have to be used for maintenance(i.e. azathioprine/6-MP, > 5-ASA, methotrexate) because prednisone has a number of serious long > term side effects, some of them irreversible. If your daughter is at > an age where she is still growing this is even more important since > corticosteroids can have detrimental effects on growth in children. > Exactly….however, we were very close to losing her at the time > (weight loss, bleeding, vomiting, etc), and the prednisone worked like > magic. She was taken off prednisone completey several months ago with > no problems. As far as long term damage goes, we are happy to > actually have the time to worry about it. The alternative would have > been unthinkable. > Joe
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Response:
> Any "poll" conducted in this NG is significantly biased toward those who > have failed various medical therapies and is therefore not in any way a > reflection of the IBD patient population.
I agree that this had hock poll was no scientific study…it was however infomative none the less. I took in account that this NG may have more patients with conditions not under control…however it was somewhat comforting to get over 20 responses from others who also said they had negative side effects from Asacol. Remember, at the time we were very close to losing my daughter….my gut was telling me it was the Asacol, but the doctor said it was highly unlikely. He strongly advised me from taking her off the medication. Out of despiration, I took her off and by the next morning, there was an noticable improvement. The reintroduction to Asacol a few days later created another downslide. We dumped the rest of the tablets down the drain. After reading up on the side effects (http://www.pgpharma.com/pi/US-Asacol.pdf), I found it interesting that the side effects of Asacol were similar to the the disease itself and this is why 5ASA intolerance may go undetected. The response from my daughter’s GI to her worsening condition was to up the Asacol dosage to 9 tablets a day…then as her condition worsened, he upped the Prednisone. Once the Asacol was removed, we were able to get her stabilized in very short time (less than 24 hours). There is no doubt in my mind that Asacol works well for a large group of people, but I would feel remissed if we didn’t also talk about those cases when the conditions clearly indicated an intolerance to 5ASA’s. There may be others out there being 5ASA intolerant, but being prescibed larger doses because the "odds are minimal". > Prednisone is often a very good short term solution but other > medications have to be used for maintenance(i.e. azathioprine/6-MP, > 5-ASA, methotrexate) because prednisone has a number of serious long > term side effects, some of them irreversible. If your daughter is at an > age where she is still growing this is even more important since > corticosteroids can have detrimental effects on growth in children.
Exactly….however, we were very close to losing her at the time (weight loss, bleeding, vomiting, etc), and the prednisone worked like magic. She was taken off prednisone completey several months ago with no problems. As far as long term damage goes, we are happy to actually have the time to worry about it. The alternative would have been unthinkable. Joe
Response:
> My daughter had the same problem….her sysmptoms disappeared within > hours of stopping Asacol. They say only 3% are 5-ASA intolerant…I > took a poll a few months back and it seems like this number is > significantly higher than whats reported.
Any "poll" conducted in this NG is significantly biased toward those who have failed various medical therapies and is therefore not in any way a reflection of the IBD patient population. Thank God for > Prednisone….it got us through a really rough time….I think the > Prednisone was counter acting the negative effects of Asacol in our case.
Prednisone is often a very good short term solution but other medications have to be used for maintenance(i.e. azathioprine/6-MP, 5-ASA, methotrexate) because prednisone has a number of serious long term side effects, some of them irreversible. If your daughter is at an age where she is still growing this is even more important since corticosteroids can have detrimental effects on growth in children.
Response:
My daughter had the same problem….her sysmptoms disappeared within hours of stopping Asacol. They say only 3% are 5-ASA intolerant…I took a poll a few months back and it seems like this number is significantly higher than whats reported. Thank God for Prednisone….it got us through a really rough time….I think the Prednisone was counter acting the negative effects of Asacol in our case. There are a lot of people out there who tolerate Asacol well….my daughter is one of the unfortunate ones…. – Hide quoted text — Show quoted text – > Hi all, > I am new to the board but I found it very helpful and supportive with lots > of useful information. I had a few questions and I was hoping someone could > help me with some answers. Back in January I was diagnosed with UC > (pancolitis). I had diarrhea with a lot of bleeding and 6 to 8 trips to > bathroom everyday. First my GI put me on ASACOL for a week but things got > worst and I started vomiting and having a high fever. At that point he put > me on Pred (40mg/day). First week was a miracle, after 4 days my bathroom > trips was between 2 to 3 with a lot less bleeding but still had the > diarrhea. In the second week my GI reduced my Pred to 35mg and the week > after that to 30mg. As soon as I was on 30mg, all symptoms came back. So I > called him and he asked me to start with a higher dose of Pred (60mg). This > is the first week for me on 60mg and I am doing better compare to a couple > of weeks ago. Still I have the diarrhea (3-4 times/day) but not much > bleeding. Here are my questions, before I was diagnosed with UC, I was about > 200 pounds, when I started Pred I was about 192 pounds. My GI said after > using Pred I will start gaining weight and he warned me to be very careful > about it. I admit that I don’t eat that much any more as I used to but I > think I still eat enough (at least I think I do), but I am still losing > weight, now I am about 173 pounds and I don’t know if there is anything I > can do about it or not to stop this weight loss. Last week I called my GI > and told him about this and he laughed and he said not gaining weight is a > good thing but I am worried about this anyway, I mean this was not the > answer I was looking for. The other question I have was about my heart bit > and pulse. It has been a while that pulse is about 110 to 120, but I have no > blood pressure. I went to a cardiologist last week and I told him about my > condition and also taking Pred, after he checked my pulse and taking an EKG > he said I am right and he wanted me to do a stress test, which he scheduled > me for today. I was wondering if anyone knows anything about this high pulse > symptom. > Thanks, > Ageen
Response:
Or the disease is still flaring the the Asacol is keeping it from being worse. mgbio – Hide quoted text — Show quoted text – > the reason you dont have relief yet is because apparently you are still taking > asacol > it is prolly the reson for all your increased diarrhea
Response:
Ditto. mgbio – Hide quoted text — Show quoted text -> the reason you dont have relief yet is because apparently you are > still taking > asacol > it is prolly the reson for all your increased diarrhea > I’m calling you out. Produce some evidence to back up your statements > about 5-ASA or retract. Like Deb, I’m tiring of reading your alarmist > crap.
Response:
> the reason you dont have relief yet is because apparently you are still taking > asacol > it is prolly the reson for all your increased diarrhea
"Probably" is incorrect. According to the official prescribing information for Asacol: "Exacerbation of the symptoms of colitis has be reported in 3% of Asacol-treated patients in controlled clinical trials." Also, under "Adverse Effects," 9% of placebo-treated patients had diarrhea, whereas only 7% of Asacol-treated patients did. These figures suggest that diarrhea in Asacol-treated patients is more often caused by the colitis than by the drug.
Response:
the reason you dont have relief yet is because apparently you are still taking asacol it is prolly the reson for all your increased diarrhea
Response:
> the reason you dont have relief yet is because apparently you are still taking > asacol > it is prolly the reson for all your increased diarrhea
I’m calling you out. Produce some evidence to back up your statements about 5-ASA or retract. Like Deb, I’m tiring of reading your alarmist crap.
Response:
Thanks to you all for answering my questions. It is so great to get this many opinions in a short period of time. The fact that I am still having the diarrhea with this high dose of Pred. makes me a little bit worried. I know everyone says it takes some time to get rid of the diarrhea and bleeding and it is different for different people but I wished I knew what is different people’s who were or still are on Pred before seeing some results. Based on what Bob said he started seeing immediate results after one week or and he went to remission but in my case I can safely say my UC is still active after one week. I mean I have all those "good and sweet symptoms" the only difference for is I just have less bleeding and less bathroom trips. Thanks again to all, Ageen
Response:
I know you’re concerned about your weight loss but boy do I envy you. Thanks to the Prednisone I’ve gained around 110lbs and having a heck of a hard time losing the extra weight. On the topic of Tachycardia, I had that too when I was on high doses of Pred. My resting heart rate was about 160! They did a scan of some sort but couldn’t work out why it was happening and never bothered looking into it any further. They never admitted it was the Pred but that’s what I think it was.
– Hide quoted text — Show quoted text -> Hi all, > I am new to the board but I found it very helpful and supportive with lots > of useful information. I had a few questions and I was hoping someone could > help me with some answers. Back in January I was diagnosed with UC > (pancolitis). I had diarrhea with a lot of bleeding and 6 to 8 trips to > bathroom everyday. First my GI put me on ASACOL for a week but things got > worst and I started vomiting and having a high fever. At that point he put > me on Pred (40mg/day). First week was a miracle, after 4 days my bathroom > trips was between 2 to 3 with a lot less bleeding but still had the > diarrhea. In the second week my GI reduced my Pred to 35mg and the week > after that to 30mg. As soon as I was on 30mg, all symptoms came back. So I > called him and he asked me to start with a higher dose of Pred (60mg). This > is the first week for me on 60mg and I am doing better compare to a couple > of weeks ago. Still I have the diarrhea (3-4 times/day) but not much > bleeding. Here are my questions, before I was diagnosed with UC, I was about > 200 pounds, when I started Pred I was about 192 pounds. My GI said after > using Pred I will start gaining weight and he warned me to be very careful > about it. I admit that I don’t eat that much any more as I used to but I > think I still eat enough (at least I think I do), but I am still losing > weight, now I am about 173 pounds and I don’t know if there is anything I > can do about it or not to stop this weight loss. Last week I called my GI > and told him about this and he laughed and he said not gaining weight is a > good thing but I am worried about this anyway, I mean this was not the > answer I was looking for. The other question I have was about my heart bit > and pulse. It has been a while that pulse is about 110 to 120, but I have no > blood pressure. I went to a cardiologist last week and I told him about my > condition and also taking Pred, after he checked my pulse and taking an EKG > he said I am right and he wanted me to do a stress test, which he scheduled > me for today. I was wondering if anyone knows anything about this high pulse > symptom. > Thanks, > Ageen
Response:
maybe they could put you on some sort of supplement of you fall underweight? i tried something called calshake and ensure. robert
– Hide quoted text — Show quoted text -> When I first got UC in 1995 my story was almost exactly like yours, pan > colitis, put on Asacol. It turned our that I was allergic to Asacol (and > all the other 5-ASA medications). The worse I got, the more Asacol my > doctor told me to take. I kept getting worse and worse, and lost 50 pounds > in 2 months. I finally was put on Prednisone, 40 mg/day and at that time I > insisted that I stop the Asacol to see if that would help. I had a complete > remission within one week. Later, my doctor tried to put me on the other > 5-ASA medications (Asacol is a 5-ASA medication) one at a time, and each > time I would have severe diarrhea within one day. > That said, not very many people are allergic to Asacol and MANY people are > helped a lot by it. Your mileage may vary. > When I am on fairly high dosage Prednisone (40-60 mg/day) I am ravenously > hungry, but my metabolism seems to be much higher than normal and I actually > lose weight during that time while eating like a pig. > I have found it better to keep the Prednisone dose high until a pretty > compete remission is obtained, and then cut down (if possible). > Sometimes I wish I knew whether we take the meds to stop the flare-up or if > we take them to get us by until the flare-up stops on its own. > -Bob > Hi all, > I am new to the board but I found it very helpful and supportive with lots > of useful information. I had a few questions and I was hoping someone > could > help me with some answers. Back in January I was diagnosed with UC > (pancolitis). I had diarrhea with a lot of bleeding and 6 to 8 trips to > bathroom everyday. First my GI put me on ASACOL for a week but things got > worst and I started vomiting and having a high fever. At that point he put > me on Pred (40mg/day). First week was a miracle, after 4 days my bathroom > trips was between 2 to 3 with a lot less bleeding but still had the > diarrhea. In the second week my GI reduced my Pred to 35mg and the week > after that to 30mg. As soon as I was on 30mg, all symptoms came back. So I > called him and he asked me to start with a higher dose of Pred (60mg). > This > is the first week for me on 60mg and I am doing better compare to a couple > of weeks ago. Still I have the diarrhea (3-4 times/day) but not much > bleeding. Here are my questions, before I was diagnosed with UC, I was > about > 200 pounds, when I started Pred I was about 192 pounds. My GI said after > using Pred I will start gaining weight and he warned me to be very careful > about it. I admit that I don’t eat that much any more as I used to but I > think I still eat enough (at least I think I do), but I am still losing > weight, now I am about 173 pounds and I don’t know if there is anything I > can do about it or not to stop this weight loss. Last week I called my GI > and told him about this and he laughed and he said not gaining weight is a > good thing but I am worried about this anyway, I mean this was not the > answer I was looking for. The other question I have was about my heart bit > and pulse. It has been a while that pulse is about 110 to 120, but I have > no > blood pressure. I went to a cardiologist last week and I told him about my > condition and also taking Pred, after he checked my pulse and taking an > EKG > he said I am right and he wanted me to do a stress test, which he > scheduled > me for today. I was wondering if anyone knows anything about this high > pulse > symptom. > Thanks, > Ageen
Response:
When I first got UC in 1995 my story was almost exactly like yours, pan colitis, put on Asacol. It turned our that I was allergic to Asacol (and all the other 5-ASA medications). The worse I got, the more Asacol my doctor told me to take. I kept getting worse and worse, and lost 50 pounds in 2 months. I finally was put on Prednisone, 40 mg/day and at that time I insisted that I stop the Asacol to see if that would help. I had a complete remission within one week. Later, my doctor tried to put me on the other 5-ASA medications (Asacol is a 5-ASA medication) one at a time, and each time I would have severe diarrhea within one day. That said, not very many people are allergic to Asacol and MANY people are helped a lot by it. Your mileage may vary. When I am on fairly high dosage Prednisone (40-60 mg/day) I am ravenously hungry, but my metabolism seems to be much higher than normal and I actually lose weight during that time while eating like a pig. I have found it better to keep the Prednisone dose high until a pretty compete remission is obtained, and then cut down (if possible). Sometimes I wish I knew whether we take the meds to stop the flare-up or if we take them to get us by until the flare-up stops on its own. -Bob
– Hide quoted text — Show quoted text -> Hi all, > I am new to the board but I found it very helpful and supportive with lots > of useful information. I had a few questions and I was hoping someone could > help me with some answers. Back in January I was diagnosed with UC > (pancolitis). I had diarrhea with a lot of bleeding and 6 to 8 trips to > bathroom everyday. First my GI put me on ASACOL for a week but things got > worst and I started vomiting and having a high fever. At that point he put > me on Pred (40mg/day). First week was a miracle, after 4 days my bathroom > trips was between 2 to 3 with a lot less bleeding but still had the > diarrhea. In the second week my GI reduced my Pred to 35mg and the week > after that to 30mg. As soon as I was on 30mg, all symptoms came back. So I > called him and he asked me to start with a higher dose of Pred (60mg). This > is the first week for me on 60mg and I am doing better compare to a couple > of weeks ago. Still I have the diarrhea (3-4 times/day) but not much > bleeding. Here are my questions, before I was diagnosed with UC, I was about > 200 pounds, when I started Pred I was about 192 pounds. My GI said after > using Pred I will start gaining weight and he warned me to be very careful > about it. I admit that I don’t eat that much any more as I used to but I > think I still eat enough (at least I think I do), but I am still losing > weight, now I am about 173 pounds and I don’t know if there is anything I > can do about it or not to stop this weight loss. Last week I called my GI > and told him about this and he laughed and he said not gaining weight is a > good thing but I am worried about this anyway, I mean this was not the > answer I was looking for. The other question I have was about my heart bit > and pulse. It has been a while that pulse is about 110 to 120, but I have no > blood pressure. I went to a cardiologist last week and I told him about my > condition and also taking Pred, after he checked my pulse and taking an EKG > he said I am right and he wanted me to do a stress test, which he scheduled > me for today. I was wondering if anyone knows anything about this high pulse > symptom. > Thanks, > Ageen
Response:
Hi all, I am new to the board but I found it very helpful and supportive with lots of useful information. I had a few questions and I was hoping someone could help me with some answers. Back in January I was diagnosed with UC (pancolitis). I had diarrhea with a lot of bleeding and 6 to 8 trips to bathroom everyday. First my GI put me on ASACOL for a week but things got worst and I started vomiting and having a high fever. At that point he put me on Pred (40mg/day). First week was a miracle, after 4 days my bathroom trips was between 2 to 3 with a lot less bleeding but still had the diarrhea. In the second week my GI reduced my Pred to 35mg and the week after that to 30mg. As soon as I was on 30mg, all symptoms came back. So I called him and he asked me to start with a higher dose of Pred (60mg). This is the first week for me on 60mg and I am doing better compare to a couple of weeks ago. Still I have the diarrhea (3-4 times/day) but not much bleeding. Here are my questions, before I was diagnosed with UC, I was about 200 pounds, when I started Pred I was about 192 pounds. My GI said after using Pred I will start gaining weight and he warned me to be very careful about it. I admit that I don’t eat that much any more as I used to but I think I still eat enough (at least I think I do), but I am still losing weight, now I am about 173 pounds and I don’t know if there is anything I can do about it or not to stop this weight loss. Last week I called my GI and told him about this and he laughed and he said not gaining weight is a good thing but I am worried about this anyway, I mean this was not the answer I was looking for. The other question I have was about my heart bit and pulse. It has been a while that pulse is about 110 to 120, but I have no blood pressure. I went to a cardiologist last week and I told him about my condition and also taking Pred, after he checked my pulse and taking an EKG he said I am right and he wanted me to do a stress test, which he scheduled me for today. I was wondering if anyone knows anything about this high pulse symptom. Thanks, Ageen
Response:
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