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All:
I haven't posted for a while so I thought I would give an update on me this morning.
It's been a stressful week for many reasons. My dog had some pretty major surgery on his foot yesterday so I am hauling him around so he can do his business, etc. and he is not a light animal. But then again, everything feels heavy to me anymore. I think I am losing muscle mass.
I did start to taper my entorcort after 2 months at full dosage. Started the taper from 3 pills/day to 2 per day on Nov 1st. I know we had talked about his being too soon to taper but I thought I would give my doctor's orders a try.
As I sit here this morning, I feel as though I am worsening. I also feel more nauseous than I have for a while. BM's are 3 or more in the morning going from firm'ish to loose.
Also, I am still losing weight to the point where I don't weigh myself anymore. I don't know if this is an absorption problem or if I am simply not taking in enough calories. I am not sure what to do about this part of the problem. I have night sweats. I am also very fatigued.
Another thing I noticed. I recently nicked my finger. A very small cut by normal standards. And it bled profusely for quite a long time. So my question is, does Entocort thin the blood?
And along that line, and I know this seems like a crazy question, but is there any correlation between LC and Lymphocytic Leukemia?
What to do???
Rich
6 Days into taper on Entocort
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
6 Days into taper on Entocort
"It's not what I believe. It's what I can prove." - A Few Good Men
Rich,
If you were not already in remission, then there was no reason to be reducing your Entocort dose. Your symptoms can only get worse - there is no way that they are going to get better, on a reduced dose. Most people find it necessary to be in remission for at least 3 to 6 months, before being able to successfully reduce the dosage rate. If you were in remission, but your symptoms are now returning, then it is clearly time to increase the dosage rate.
With night sweats, and fatigue, (in addition to the other symptoms), you are experiencing a pretty potent episode - you seem to be a long way from remission.
Your weight problem is probably a combination of inadequate calories, together with a malabsorption problem.
As far as I'm aware, there's no known tendency for budesonide to affect one's platelet count, or blood clotting ability. Corticosteroids in general, tend to cause thinning of the skin, (which can cause problems such as nosebleed with inhaled budesonide), and it is known to cause easy bruising, (which suggests that it might weaken small capillaries), but there is no label warning about external bleeding, (though there are label warnings about possible rectal or vaginal bleeding).
I don't see how there could be a connection between LC and chronic lymphocytic leukemia, (CLL, which is the most common type of leukemia). Not only do these two events involve sort of opposite effects, but they involve 2 different types of lymphocytes. LC involves the infiltration of T-cell lymphocytes into the epithelia of the colon, (which causes inflammation), whereas CLL is characterized by B-cells which contain damaged DNA, thus interfering with antibody production. As far as I'm aware, there is no documented connection.
Tex
If you were not already in remission, then there was no reason to be reducing your Entocort dose. Your symptoms can only get worse - there is no way that they are going to get better, on a reduced dose. Most people find it necessary to be in remission for at least 3 to 6 months, before being able to successfully reduce the dosage rate. If you were in remission, but your symptoms are now returning, then it is clearly time to increase the dosage rate.
With night sweats, and fatigue, (in addition to the other symptoms), you are experiencing a pretty potent episode - you seem to be a long way from remission.
Your weight problem is probably a combination of inadequate calories, together with a malabsorption problem.
As far as I'm aware, there's no known tendency for budesonide to affect one's platelet count, or blood clotting ability. Corticosteroids in general, tend to cause thinning of the skin, (which can cause problems such as nosebleed with inhaled budesonide), and it is known to cause easy bruising, (which suggests that it might weaken small capillaries), but there is no label warning about external bleeding, (though there are label warnings about possible rectal or vaginal bleeding).
I don't see how there could be a connection between LC and chronic lymphocytic leukemia, (CLL, which is the most common type of leukemia). Not only do these two events involve sort of opposite effects, but they involve 2 different types of lymphocytes. LC involves the infiltration of T-cell lymphocytes into the epithelia of the colon, (which causes inflammation), whereas CLL is characterized by B-cells which contain damaged DNA, thus interfering with antibody production. As far as I'm aware, there is no documented connection.
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.
OK Tex,
Was hoping to hear from you, Joe, Polly, and the others. I am going back to 3 Entocorts/day pronto. I just got my shipment of generic Entocort from that lab in India so I now have enough. I assume I can even mix the two meds as they are supposed to be the same.
Sorry to be such a pain in the ass, Tex, no pun intended. Seems like a lot of people lean very hard on you, myself included, for your knowledge, guidance, and support. I can, at times, forget that you too are dealing with so much more than most of us.
So back up to 3/day. My doc wouldn't let me do any higher. So I am contemplating boosting it even higher.
Rich
Was hoping to hear from you, Joe, Polly, and the others. I am going back to 3 Entocorts/day pronto. I just got my shipment of generic Entocort from that lab in India so I now have enough. I assume I can even mix the two meds as they are supposed to be the same.
Sorry to be such a pain in the ass, Tex, no pun intended. Seems like a lot of people lean very hard on you, myself included, for your knowledge, guidance, and support. I can, at times, forget that you too are dealing with so much more than most of us.
So back up to 3/day. My doc wouldn't let me do any higher. So I am contemplating boosting it even higher.
Rich
"It's not what I believe. It's what I can prove." - A Few Good Men
Rich,
The idea is to use whatever minimum dose will effectively control your symptoms. If 9 mg won't control your symptoms, (after a week or two), then you might try 12 mg, (or 15, or 18 mg), but always be on the lookout for side effects, and don't use the higher doses any longer than necessary, because for most people, 9 mg should be adequate, and after remission is well established, 6 mg should be adequate for maintaining remission. 3 mg per day, (or less), usually will not work, (for most of us), until remission has been in place for many months, and/or the gut has had a chance to do some significant healing.
Hey, you're definitely not a PITA
- I'm here to learn, just like everyone else, and it's a pleasure exchanging experiences and ideas with you.
Tex
P. S. I agree with Joe - those products should be pretty much interchangeable.
The idea is to use whatever minimum dose will effectively control your symptoms. If 9 mg won't control your symptoms, (after a week or two), then you might try 12 mg, (or 15, or 18 mg), but always be on the lookout for side effects, and don't use the higher doses any longer than necessary, because for most people, 9 mg should be adequate, and after remission is well established, 6 mg should be adequate for maintaining remission. 3 mg per day, (or less), usually will not work, (for most of us), until remission has been in place for many months, and/or the gut has had a chance to do some significant healing.
Hey, you're definitely not a PITA
- I'm here to learn, just like everyone else, and it's a pleasure exchanging experiences and ideas with you.Tex
P. S. I agree with Joe - those products should be pretty much interchangeable.
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 Tex. Going back to 9mg. May go a little higher if I see no changes.
Robbie, yup struggling a little lately. But perhaps due to dosage drop on Entocort. Going back to 9mg now. Have a good doc, but not one that I can talk into 6 months of Entocort at 9mg so the overseas pharmacy will have to be my source for a while. Which is no big deal. Whatever it takes.
Rich
Robbie, yup struggling a little lately. But perhaps due to dosage drop on Entocort. Going back to 9mg now. Have a good doc, but not one that I can talk into 6 months of Entocort at 9mg so the overseas pharmacy will have to be my source for a while. Which is no big deal. Whatever it takes.
Rich
"It's not what I believe. It's what I can prove." - A Few Good Men
I was on 3 pills a day for several years before I could taper down.. then on 2 pills a day for a year or so.. now am able to take 1 a day. My GI doc said he sees no reason all GI docs don't use entocort for CC since it is the most effective and least harmful treatment.. least harmful when compared to prednisone and the cancer treatment drugs.
grannyh
grannyh
No side effects that I know of... I am old... well past child bearing age.. and have my life back... that is what is important to me:)
My GI doc has no problem giving me a prescription a year at a time. Family doc will prescribe it... but only a month at a time.. the reason? The family doctor does not have any other patients taking entocort and is not familiar with the drug and how it is used. Of course he has looked into the drug... but using it for CC is off label... GI doc said I didn't have to come back unless I had a problem.. but I go back every two years to get the year long prescription.
grannyh
My GI doc has no problem giving me a prescription a year at a time. Family doc will prescribe it... but only a month at a time.. the reason? The family doctor does not have any other patients taking entocort and is not familiar with the drug and how it is used. Of course he has looked into the drug... but using it for CC is off label... GI doc said I didn't have to come back unless I had a problem.. but I go back every two years to get the year long prescription.
grannyh
My GI doc said either 3 pills a day would work or they wouldn't.. he didn't suggest a higher dose. If 3 a day of entocort did not work..the next step was one of the cancer treatment drugs.
It took several weeks for the 3 pills a day to start to work. I am not a doctor and have no medical training..that said.. it sounds to me as if your doctor is prescribing entocort about the same way some doctors do with prednisone.. looking at what the equivalent of prednisone would be..not realizing they are not the same drug nor do they work the same way...
A doctor once gave me an overdose of prednisone for a back injury.. didn't have D for 6 months.. and didn't need the entocort... then the overdose of prednisone wore off and I had to work with entocort to get back to remission...
grannyh
It took several weeks for the 3 pills a day to start to work. I am not a doctor and have no medical training..that said.. it sounds to me as if your doctor is prescribing entocort about the same way some doctors do with prednisone.. looking at what the equivalent of prednisone would be..not realizing they are not the same drug nor do they work the same way...
A doctor once gave me an overdose of prednisone for a back injury.. didn't have D for 6 months.. and didn't need the entocort... then the overdose of prednisone wore off and I had to work with entocort to get back to remission...
grannyh