I saw my GI doc yesterday. Can't believe they made me wait over a month after the capsule endoscopy (camera pill). The test was completely negative. I knew it would be. Anyway, he started me on 40 mg Prednisone for starters. Probably will be off in 3 months after tapering down during next 3 months. I am to call him in 10 days to let him know how I am doing. Hope this works!!! Then, if this works, and I have resolution of the D, then he thinks it will be Immuran after that. I hate taking medicine but right now I will do anything!!
Pat
Finally on medication
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Pat,
I'm glad you're finally going to get some relief. You've been living with this for a long time, now, and I have to agree that it was kind of cruel to make you wait over a month for a follow-up visit. I wonder why he chose Immuran, (azathioprine)? I think you would be better served by a shorter course of Prednisone, and then a switch to Entocort, but we can't always have our druthers, and only doctors can write prescriptions, so we're kinda stuck with the routine.
The problem I have with azathioprine is that it has kind of a dirty little secret that makes it a somewhat risky drug to use for some patients with this disease.
http://www.ncbi.nlm.nih.gov/pubmed/1124 ... PlusDrugs1
It's probably a very slight risk, and while it's true that most drugs used to treat IBDs carry a risk of diarrhea, I'm not aware of any other drug that carries a risk of life-threatening diarrhea.
Azathioprine is an immunosuppressant, and it helps to suppress inflammation by inhibiting purine synthesis necessary for the proliferation of cells, especially leukocytes. Since it suppresses the bone marrow, patients are more susceptable to infection, (as with all immunosuppressants). It is also listed as a human carcinogen. In consideration of all of that, I would have preferred to see Entocort chosen for the second stage of treatment, instead of Immuran.
Tex
I'm glad you're finally going to get some relief. You've been living with this for a long time, now, and I have to agree that it was kind of cruel to make you wait over a month for a follow-up visit. I wonder why he chose Immuran, (azathioprine)? I think you would be better served by a shorter course of Prednisone, and then a switch to Entocort, but we can't always have our druthers, and only doctors can write prescriptions, so we're kinda stuck with the routine.
The problem I have with azathioprine is that it has kind of a dirty little secret that makes it a somewhat risky drug to use for some patients with this disease.
http://www.ncbi.nlm.nih.gov/pubmed/1124 ... PlusDrugs1
It's probably a very slight risk, and while it's true that most drugs used to treat IBDs carry a risk of diarrhea, I'm not aware of any other drug that carries a risk of life-threatening diarrhea.
Azathioprine is an immunosuppressant, and it helps to suppress inflammation by inhibiting purine synthesis necessary for the proliferation of cells, especially leukocytes. Since it suppresses the bone marrow, patients are more susceptable to infection, (as with all immunosuppressants). It is also listed as a human carcinogen. In consideration of all of that, I would have preferred to see Entocort chosen for the second stage of treatment, instead of Immuran.
Tex
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barbaranoela
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Pat---am curious about the PRED.---is that dosage of 40mgs. a once a day pill???
Reason why I ask-----when I was put on Pred. is was a 10 mg pill --1 three times a day--
Then slooooooooowly weaned off it----I was like a jumping bean--
Second time around (cus I was in the hospital) it was intravenously administered and that WAS the WAY to GO!!!
I hope everything works out for U~~~~
luve Barbara
Reason why I ask-----when I was put on Pred. is was a 10 mg pill --1 three times a day--
Then slooooooooowly weaned off it----I was like a jumping bean--
Second time around (cus I was in the hospital) it was intravenously administered and that WAS the WAY to GO!!!
I hope everything works out for U~~~~
luve Barbara
the fruit of the spirit is love, joy, peace, patience, kindness, goodness, faithfulness and self-control
Sorry to hear you had to wait so long after the Camera Pill to get some relief. I too had that done and it also came back negative even though he was POSITIVE i had Crohns.
Hope the Prednisone works well for you!
Hope the Prednisone works well for you!
Diagnosed with MC on 1/8/2008 after 7 months of flare. 2nd colonoscopy and new diagnosis of UC on 3/11/2008.
Barbara,
He told me and the bottle says 4 pills in the morning. They are 10 mg pills each. So it is all at once. I can use the pep. Not only am I fatiqued I am in the process of putting my mother in an assisted living facility. So I have been packing, throwing away, giving away. I have to drive 1 1/2 hours away to go to her present place. It will be nice to have her 5 minutes away. I need the extra energy right now. The doctor did give me a script for Abien if I can't sleep. Will keep you all posted.
Tex,
I asked the doctor if I could just take Entocort for the post Prednisone med and he said that the Entocort didn't work for me last year. I said well I was not on this ridiculous diet then. He said I see what you are saying. And then he left it at that. I guess we will see when the time comes. I thnk I would rather have the Entocort but like you said we are at their mercy.
Thanks all,
Pat
He told me and the bottle says 4 pills in the morning. They are 10 mg pills each. So it is all at once. I can use the pep. Not only am I fatiqued I am in the process of putting my mother in an assisted living facility. So I have been packing, throwing away, giving away. I have to drive 1 1/2 hours away to go to her present place. It will be nice to have her 5 minutes away. I need the extra energy right now. The doctor did give me a script for Abien if I can't sleep. Will keep you all posted.
Tex,
I asked the doctor if I could just take Entocort for the post Prednisone med and he said that the Entocort didn't work for me last year. I said well I was not on this ridiculous diet then. He said I see what you are saying. And then he left it at that. I guess we will see when the time comes. I thnk I would rather have the Entocort but like you said we are at their mercy.
Thanks all,
Pat
Pat,
Well, let's just hope the treatment program works, anyway. As you say, you can cross that bridge when you get to it.
Please keep us posted, and good luck with the treatment.
Tex
Well, let's just hope the treatment program works, anyway. As you say, you can cross that bridge when you get to it.
Please keep us posted, and good luck with the 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.
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harvest_table
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Pat,
Think I've mentioned this to you previously, a 3 month round of Pred followed by 6 months on Entocort did a very good job at the onset of my road to recovery. The pred made me feel like a millon bucks right off the bat, stopped the D in it's tracks but D started returning after I weaned off it.
I don't believe I would be where I am today without following up the Pred with Entocort for 6 months along with adapting a gf diet. Over the years have tweaked my diet into eating paleo and would not say I'm in remission - just able to control MC symptoms with diet alone and it's been almost 4 years since my DX. If I stray from the diet though, I will have problems.
Sure hope you find relief soon! The good news is your already an experienced dieter so your ahead of the game!
Love,
Joanna
Think I've mentioned this to you previously, a 3 month round of Pred followed by 6 months on Entocort did a very good job at the onset of my road to recovery. The pred made me feel like a millon bucks right off the bat, stopped the D in it's tracks but D started returning after I weaned off it.
I don't believe I would be where I am today without following up the Pred with Entocort for 6 months along with adapting a gf diet. Over the years have tweaked my diet into eating paleo and would not say I'm in remission - just able to control MC symptoms with diet alone and it's been almost 4 years since my DX. If I stray from the diet though, I will have problems.
Sure hope you find relief soon! The good news is your already an experienced dieter so your ahead of the game!
Love,
Joanna
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Joanna,
You sort of caught me by surprise when you mentioned that you wouldn't say that you're in remission. Are you having symptoms? If you have no symptoms, you're in remission, by definition.
Love,
Tex
You sort of caught me by surprise when you mentioned that you wouldn't say that you're in remission. Are you having symptoms? If you have no symptoms, you're in remission, by definition.
Love,
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.
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harvest_table
- Rockhopper Penguin
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Hey Tex,tex wrote:Joanna,
You sort of caught me by surprise when you mentioned that you wouldn't say that you're in remission. Are you having symptoms? If you have no symptoms, you're in remission, by definition.
No, not having symptoms at this time but earlier this fall was having vertigo problems (which have now stopped) and felt it was a component of my CC. Now, I'm almost certain it was.
I've been very focused and content with diet control for 3 years but find if I deviate from Paleo in the slightest I will have symptoms, so, I just don't feel like I've pulled myself into a remission. If a person is managing their MC with medication everyday I wouldn't call that remisson either, would you?
Also, the more research we do it is apparent MC can manifest (or hide) during the early, middle or later stages of many other imflamatory & autoimmune health related issues.
Personally, I'm optomistic but bracing for whatever is down the road. Ya know what I mean?
Love,
Joanna
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MaggieRedwings
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Morning Joanna,
I have found that the road has been very rough and every time it seems to smooth out and I feel like I can use the R word, it gets bumpy again. I really do not think that it is a word I will ever use but sure would like to. With the full dosage of Entocort, I felt like I was almost there and so happy to have had Norman visit. Since I have had to cut back and now upped it to 3 mg every other day, I am still in the state of no Norman.
I am with you on the fact that it is always hiding somewhere and instead of the R word I feel more like calling it the camouflage disease.
I also feel the vertigo has more to do with this disease than with anything else.
Love, Maggie
I have found that the road has been very rough and every time it seems to smooth out and I feel like I can use the R word, it gets bumpy again. I really do not think that it is a word I will ever use but sure would like to. With the full dosage of Entocort, I felt like I was almost there and so happy to have had Norman visit. Since I have had to cut back and now upped it to 3 mg every other day, I am still in the state of no Norman.
I am with you on the fact that it is always hiding somewhere and instead of the R word I feel more like calling it the camouflage disease.
I also feel the vertigo has more to do with this disease than with anything else.
Love, Maggie
Maggie Scarpone
___________________
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Resident Birder - I live to bird and enjoy life!
Hi Joanna,
According to Webster, one of the defiinitions of remission is:
a temporary or permanent decrease or subsidence of manifestations of a disease.
Obviously that implies that if the symptoms are controlled, the disease is in remission. That means that we can be in remission by any means that alleviates the symptoms, whether it be diet, medications, good fortune, or whatever.
And yes, at any given moment, virtually all of us may be only one bite of food, or one missed dose of a med, away from having a reaction, and losing that state of remission. That is indeed the nature of the disease.
The main thing that I focus on is that as long as I'm careful, I rarely have a problem, and vivid memories of those miserable years before remission, help me to stay focused. LOL.
I agree with you and Maggie that the vertigo issue is certainly connected. Before I achieved remission, I had some really bad attacks of vertigo - more than a few times, I had to get back in bed, to keep from falling down. Fortunately for me, though, they typically only lasted for an hour or so. Usually, I had vertigo when I didn't have any other "serious" symptoms that day, so I suspect that it's a separate but connected issue, rather than a result of other symptoms. Thinking back, on the days when I was the sickest, (nausea, headache, severe aches and pains, bloating, uncontrollable diarrhea, etc.), I don't believe that I ever had any really serious vertigo, (though I was certainly a bit "dizzy" at times). The worst "attacks" always seemed to occur when the typical MC symptoms were either minimal, or not present at all.
I'm more than optimistic - I feel like I've got it licked. I just have to watch out that I don't stumble, and fall back in the "pit".
Love,
Tex
According to Webster, one of the defiinitions of remission is:
a temporary or permanent decrease or subsidence of manifestations of a disease.
Obviously that implies that if the symptoms are controlled, the disease is in remission. That means that we can be in remission by any means that alleviates the symptoms, whether it be diet, medications, good fortune, or whatever.
And yes, at any given moment, virtually all of us may be only one bite of food, or one missed dose of a med, away from having a reaction, and losing that state of remission. That is indeed the nature of the disease.
The main thing that I focus on is that as long as I'm careful, I rarely have a problem, and vivid memories of those miserable years before remission, help me to stay focused. LOL.
I agree with you and Maggie that the vertigo issue is certainly connected. Before I achieved remission, I had some really bad attacks of vertigo - more than a few times, I had to get back in bed, to keep from falling down. Fortunately for me, though, they typically only lasted for an hour or so. Usually, I had vertigo when I didn't have any other "serious" symptoms that day, so I suspect that it's a separate but connected issue, rather than a result of other symptoms. Thinking back, on the days when I was the sickest, (nausea, headache, severe aches and pains, bloating, uncontrollable diarrhea, etc.), I don't believe that I ever had any really serious vertigo, (though I was certainly a bit "dizzy" at times). The worst "attacks" always seemed to occur when the typical MC symptoms were either minimal, or not present at all.
I'm more than optimistic - I feel like I've got it licked. I just have to watch out that I don't stumble, and fall back in the "pit".
Love,
Tex
Maggie,
3 mg of Entocort every other day is a very low dose. Is vertigo the reason why you are reluctant to increase the dose above that?
If I remember correctly, you were having some vertigo problems before you started taking Entocort, but it seemed to become worse, after beginning the Entocort treatment. (Or am I wrong about that?) If so, do you feel that the Entocort was to blame for making the vertigo worse, or do you think that was merely a coincidence?
Love,
Tex
3 mg of Entocort every other day is a very low dose. Is vertigo the reason why you are reluctant to increase the dose above that?
If I remember correctly, you were having some vertigo problems before you started taking Entocort, but it seemed to become worse, after beginning the Entocort treatment. (Or am I wrong about that?) If so, do you feel that the Entocort was to blame for making the vertigo worse, or do you think that was merely a coincidence?
Love,
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.