Hi Karen,
Here's a link to an article that proves that long-term treatment with budesonide is safe:
https://gut.bmj.com/content/65/1/47.full
But you still will need to start with a full dose to get into remission first, before reducing the dose. However, you can reduce it to a lot lower dose than was mentioned in the research article, and it should still work. Doctors could locate this type of published research if they gave a hoot, but they really don't care. They're more concerned about covering their own butts from lawsuits if something goes wrong.
Hope this helps,
Tex
I need a miracle, or some good meds!
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Tex, you are a Godsend! (as always) I wish I could take you to my Dr's appt with me. 
The PA's eyes got very wide at the thought of someone being on a steroid for 6 months, I bet you could have explained it all to her. I feel like Dr's are placating (an inwardly rolling their eyes) when I tell them about the forum and all of the helpful information....I feel she wasn't very knowledgable about Budesonide....
Of course the GI couldn't get me in today and now I'm wondering (since I would be a new patient--I'm not fond of my diagnosing GI's office) that they are going to want to do their own testing before prescribing anything. And, if I suck it up and call the old GI surely they will want to see me first as it's been two years.
The PA's eyes got very wide at the thought of someone being on a steroid for 6 months, I bet you could have explained it all to her. I feel like Dr's are placating (an inwardly rolling their eyes) when I tell them about the forum and all of the helpful information....I feel she wasn't very knowledgable about Budesonide....
Of course the GI couldn't get me in today and now I'm wondering (since I would be a new patient--I'm not fond of my diagnosing GI's office) that they are going to want to do their own testing before prescribing anything. And, if I suck it up and call the old GI surely they will want to see me first as it's been two years.
Karen
Hi Tex,
Thank you so much for posting that research. The fact that they used 4.5 mg. as the low dose makes me feel comfortable about staying on the 3 mg dose for at least a year. As you know, I was able to manage with diet alone for 20 years, but it was very stressful due to the constant monitoring and vigilance. With 3 mg Budesonide every day, I feel like I've gotten a new lease on life
. I don't yet feel secure enough to start tapering. If constipation ever sets in, I will take it as a sign to cut back.
Love,
Kari
Thank you so much for posting that research. The fact that they used 4.5 mg. as the low dose makes me feel comfortable about staying on the 3 mg dose for at least a year. As you know, I was able to manage with diet alone for 20 years, but it was very stressful due to the constant monitoring and vigilance. With 3 mg Budesonide every day, I feel like I've gotten a new lease on life
. I don't yet feel secure enough to start tapering. If constipation ever sets in, I will take it as a sign to cut back.Love,
Kari
"My mouth waters whenever I pass a bakery shop and sniff the aroma of fresh bread, but I am also grateful simply to be alive and sniffing." Dr. Bernstein
Follow-up: My primary came through with the script for Budesonide! She does want me to follow up with a GI though, which I'm not thrilled about. Either go to the old GI, who's practice I don't care for but they have my information, or go to a new GI who will probably want to run all their own tests...... that's tomorrow's problem though. The meds will get me through the next several months. *fingers crossed it works*
Does Budesonide weaken your immune system like other steroids do?
Does Budesonide weaken your immune system like other steroids do?
Karen
It will begin to suppress the immune system after a few months. By 6 months to a year it will probably be a significant amount, depending on how your immune system responds to it.Karen wrote:Does Budesonide weaken your immune system like other steroids do?
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.
Karen,
I'm so slow that I have to get up early to get everything done, unless I want to work way into the night, trying to catch up.
Just be sure to keep your Vitamin D and magnesium levels up. As I'm sure you're well aware, vitamin D is necessary for proper immune system functioning (and to protect against a cytokine storm, in case you should catch Covid-19). And adequate magnesium is necessary to activate vitamin D so that the immune system can use it. This is especially important since budesonide depletes magnesium.
I doubt that you need these reminders, but someone else reading this might benefit from it.
Tex
I'm so slow that I have to get up early to get everything done, unless I want to work way into the night, trying to catch up.
Just be sure to keep your Vitamin D and magnesium levels up. As I'm sure you're well aware, vitamin D is necessary for proper immune system functioning (and to protect against a cytokine storm, in case you should catch Covid-19). And adequate magnesium is necessary to activate vitamin D so that the immune system can use it. This is especially important since budesonide depletes magnesium.
I doubt that you need these reminders, but someone else reading this might benefit from it.
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.
Hahaha, I don't know Tex, you seem pretty snappy and quick to me!
Oh, I so need the reminders! Thank you! I actually stopped taking both to see if it would have any beneficial effect on my getting into remission. No change and I forgot to start taking them again! (I have a spray Magnesium that I put on when I remember......)
Oh, I so need the reminders! Thank you! I actually stopped taking both to see if it would have any beneficial effect on my getting into remission. No change and I forgot to start taking them again! (I have a spray Magnesium that I put on when I remember......)
Karen
Hi Karen,
That's an incredible price!!! I will try to switch my script to GoodRX - thanks for letting us know. It doesn't seem like my script will ever be filled by AllDayChemist this time. They are having a tough time with Covid-19 in India.
I know Budesonide does not work for everyone, but it does for a high percentage of us. I will keep my fingers crossed that it works as well for you as it does for me!!! Wishing you the best, and please keep us updated on your progress.
Love,
Kari
That's an incredible price!!! I will try to switch my script to GoodRX - thanks for letting us know. It doesn't seem like my script will ever be filled by AllDayChemist this time. They are having a tough time with Covid-19 in India.
I know Budesonide does not work for everyone, but it does for a high percentage of us. I will keep my fingers crossed that it works as well for you as it does for me!!! Wishing you the best, and please keep us updated on your progress.
Love,
Kari
"My mouth waters whenever I pass a bakery shop and sniff the aroma of fresh bread, but I am also grateful simply to be alive and sniffing." Dr. Bernstein
For some reason the price of budesonide EC has really come down. There are several competitors now to GoodRX, like WellRX, that have a similar price for Entocort EC. I also checked the medicare.gov web site and the Part D Prescription Drug Plans. For those of you on Medicare, the price there has gone down for many of the plans too. This year, the cost varies from $28.50/month for 90 pills (Cigna-HealthSpring Rx Secure) to an astounding $698 (Wellcare Wellness RX). You can check what your Part D plan charges on the medicare.gov web site. Plans change every year, so during the fall open enrollment period for Part D plans, you can investigate on the medicare.gov web site and sign up for the plan that works best for your drugs for the following year.
Of course, the appeal of AllDayChemist isn't just the cost, but that you don't need a prescription..........
If anyone is unsure about how to do this, you can pm me with your zip code and name of your Part D plan, and I would be glad to check for you.
Rosie
Of course, the appeal of AllDayChemist isn't just the cost, but that you don't need a prescription..........
If anyone is unsure about how to do this, you can pm me with your zip code and name of your Part D plan, and I would be glad to check for you.
Rosie
Our greatest weakness lies in giving up. The most certain way to succeed is always to try just one more time………Thomas Edison