Morning All,
Had my gastro appointment yesterday and had already weaned down to 6 mg of Entocort and my doc said he knew I would do things my way if I felt "overpowered" by the Entocort. Wants me to do 6 more weeks of 6 mg. and then 2 weeks of nothing. After that I will see him and report results and get more blood work re: the folic levels, etc. He is not of the mind that one should have a maintenance dosage daily of 3 mg. Entocort. I thought this was pretty standard and let him know that if things revert I would be using a maintenance dosage. He just laughed and said between the 2 of this we would get things right.
Was I wrong to think I needed a maintenance dosage? My feeling is that without this "miracle" drug I will be back where I was 3 months ago.
Love, Maggie
Gastro Appointment Yesterday
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MaggieRedwings
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Gastro Appointment Yesterday
Maggie Scarpone
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Resident Birder - I live to bird and enjoy life!
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Resident Birder - I live to bird and enjoy life!
Hi Maggie,
Everytime I hear you report about your good results with Entocort I'm just thrilled for you all over again! I think you should take a maintanence dose if that's what it takes to keep you healthy. You were sick for so long, and I'd hate to see you relapse. Just my uninformed opinion, and not based on anything, since I've never taken that drug nor done any research on it
Hi to Frank!
Love,
Alice
Everytime I hear you report about your good results with Entocort I'm just thrilled for you all over again! I think you should take a maintanence dose if that's what it takes to keep you healthy. You were sick for so long, and I'd hate to see you relapse. Just my uninformed opinion, and not based on anything, since I've never taken that drug nor done any research on it
Hi to Frank!
Love,
Alice
Maggie,
Of course, it's always possible that if your gut has sufficient time to heal, and you remain GF, you might not need any more Entocort. I agree with Alice, though, if you need it, don't hesitate to insist on a maintenance dose.
Two weeks may not be sufficient time to judge whether or not you will be able to do without it. At the 6 mg per day dosage, the residual effects might last a bit longer than two weeks. In fact, some authorities insist that it sometimes takes up to eight weeks before one can be sure that a relapse of MC will not occur, after ending treatment with Entocort, and this is normally after tapering to a maintenance dose for a few weeks before ending the treatment. My impression is that it's always best to taper the dosage when ending a treatment involving steroids, in order to allow the body time to readjust, as it weans off the "dependency", but obviously, some doctors disagree with this.
A maintenance dose is certainly necessary for any MC patient who does not follow a strict diet, and it may be necessary in a severe case such as yours, even though you remain on the diet, but as you know, everyone is different, so there is a chance that your doctor's plan will work. I certainly hope it works, but if it doesn't, you know what to do.
Love,
Tex
Of course, it's always possible that if your gut has sufficient time to heal, and you remain GF, you might not need any more Entocort. I agree with Alice, though, if you need it, don't hesitate to insist on a maintenance dose.
Two weeks may not be sufficient time to judge whether or not you will be able to do without it. At the 6 mg per day dosage, the residual effects might last a bit longer than two weeks. In fact, some authorities insist that it sometimes takes up to eight weeks before one can be sure that a relapse of MC will not occur, after ending treatment with Entocort, and this is normally after tapering to a maintenance dose for a few weeks before ending the treatment. My impression is that it's always best to taper the dosage when ending a treatment involving steroids, in order to allow the body time to readjust, as it weans off the "dependency", but obviously, some doctors disagree with this.
A maintenance dose is certainly necessary for any MC patient who does not follow a strict diet, and it may be necessary in a severe case such as yours, even though you remain on the diet, but as you know, everyone is different, so there is a chance that your doctor's plan will work. I certainly hope it works, but if it doesn't, you know what to do.
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.
I am truly so thankful and yes, even joyful, that the Entocort is working so well for you. I would be very nervous about no maintainance dose in your position, but I understand your need to work with your Dr. Don't hesitate to insist if you need to, but I know you will. You have a LOT of will power. Your Dr. doesn't stand a chance. HaHa
Love, Shirley
Love, Shirley
When the eagles are silent, the parrots begin to jabber"
-- Winston Churchill
-- Winston Churchill
Hey Mags,
Just my opinion, but you need to find out what your body will do. I did not have to stay on a maintenance dosage of Entocort...I took it until it "kicked in" and then stopped it completely. I have only ever taken short rounds of Entocort (I think the longest was under five weeks).
I do, however, stay on a very small maintenance dosage of the Asacol (one or two a day and that's it right now). And believe me, I tested that theory until I knew I had no choice
I know the Asacol didn't work for you, but just thought I'd let you know what's keeping me "under control".
I'm so glad things are improving for you, and hopefully one day real soon you'll know exactly what you need to do and that it'll be painless.
Luv
Peg
Just my opinion, but you need to find out what your body will do. I did not have to stay on a maintenance dosage of Entocort...I took it until it "kicked in" and then stopped it completely. I have only ever taken short rounds of Entocort (I think the longest was under five weeks).
I do, however, stay on a very small maintenance dosage of the Asacol (one or two a day and that's it right now). And believe me, I tested that theory until I knew I had no choice
I know the Asacol didn't work for you, but just thought I'd let you know what's keeping me "under control".I'm so glad things are improving for you, and hopefully one day real soon you'll know exactly what you need to do and that it'll be painless.
Luv
Peg
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barbaranoela
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harvest_table
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annie oakley
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I think you have to do what works for you, Love Oma
When I reported to my GI last month, his nurse asked only one question: "How many BMs are you having a day?" I responded "Two." She called back and said the GI wanted me to stay on the 3X day for another month. My 3rd month is up this week and I'm still having 2 normal BMs per day. I want to taper the dosage, but I'm wondering if I should be down to 1 BM per day? Everything else is fine - no gas, cramps, no side effects.
Should I press for a reduction in the dosage? My goal is to get off the steroid completely and handle this with diet. But if I'm going to be on it indefinitely, then I might as well start eating all those foods I'm missing.
Should I press for a reduction in the dosage? My goal is to get off the steroid completely and handle this with diet. But if I'm going to be on it indefinitely, then I might as well start eating all those foods I'm missing.
You never know what you can do until you have to do it.
Gloria,
How many BMs did you normally have each day in all the years before the MC symptoms began?
Some people normally have more than one daily BM. It's also possible that your "normal" routine may have been permanently altered by the effects of MC on your enteric nervous system. For example, MC, or damage from gluten, or something that happened back when I was reacting regularly, destroyed my ability to feel hunger pangs. I haven't felt any hunger pangs in over five years, so apparently the loss is permanent, in my case.
I don't believe that it's uncommon to take Entocort for six months or more, before tapering down, in order to allow plenty of time for the gut to heal. Maybe Joanna, (harvest_table), will see this topic and comment on it. I'm thinking that she took it for around six months, while on the diet, before tapering her dosage rate and then terminating it completely. If my memory is correct, her two-year anniversary for remaining in remission by diet alone, is coming up in January.
Tex
How many BMs did you normally have each day in all the years before the MC symptoms began?
Some people normally have more than one daily BM. It's also possible that your "normal" routine may have been permanently altered by the effects of MC on your enteric nervous system. For example, MC, or damage from gluten, or something that happened back when I was reacting regularly, destroyed my ability to feel hunger pangs. I haven't felt any hunger pangs in over five years, so apparently the loss is permanent, in my case.
I don't believe that it's uncommon to take Entocort for six months or more, before tapering down, in order to allow plenty of time for the gut to heal. Maybe Joanna, (harvest_table), will see this topic and comment on it. I'm thinking that she took it for around six months, while on the diet, before tapering her dosage rate and then terminating it completely. If my memory is correct, her two-year anniversary for remaining in remission by diet alone, is coming up in January.
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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I took Entocort exactly 6 months, weaned down slowly within the last couple months but more importantly, started a GF diet at the same time so I had 6 months of newbie GFing under my belt when I stop the medication. It's also worth mentioning I had taken a 2 month round of Pred. just prior to the Entocort and I believe that gave me a good jump start on the Entocort/diet route. You can read more about my journey in the medical profiles here. I will update it as soon as I have time.tex wrote:I don't believe that it's uncommon to take Entocort for six months or more, before tapering down, in order to allow plenty of time for the gut to heal. Maybe Joanna, (harvest_table), will see this topic and comment on it. I'm thinking that she took it for around six months, while on the diet, before tapering her dosage rate and then terminating it completely. If my memory is correct, her two-year anniversary for remaining in remission by diet alone, is coming up in January.Tex
Yes, my 2 year anniversary is coming up and thanks for remembering Tex. I'm doing great eating Paleo which is basically fresh whole foods with some legume/nightshade limitations as well as no grains, dairy, processed foods and sugar. Sounds restrictive doesn't it but it's not, and I enjoy each and every meal. Shucks though, I don't feel like I'm in remission because even after 2 years if I stray from this diet I have problems.
Hang in!
Love,
Joanna
THE GLUTEN FILES
http://jccglutenfree.googlepages.com/
http://jccglutenfree.googlepages.com/