Hi folks,
Well, it's back. And so am I! Just wanted to touch base with you compassionate and experienced folks as this is my first setback/recurrence.
Some background. My Microscopic Colitis was the result of a parasitic infection (cryptosporidium) from accidental ingestion of Minnesota lake water while swimming. Just bad luck according to the Dept. of Health. Cured the parasite but was left with MC which was diagnosed via colonoscopy when symptoms didn't go away after ridding of the parasite.
Anyways, with the advice of Tex and his book and the folks here, I went on Budesonide in Feb of 2018, had positive response in 10 days, clinical remission was achieved in about a month. Went on a VERY slow taper (9mg to 6mg to 3mg to 3mg every other day, every third day, finally every fourth day) with a taper that lasted about 9 months start to finish. I also immediately went gluten free, dairy free, low sugar, low fat, smaller meals. I was feeling great in November of 18 when I stopped the drug, my GI was absolutely normal and all was good in the kingdom!
Fast forward to this past winter. Still gluten free, dairy free (which Enterolab testing showed slight sensitivity to), vitamin D levels around 50-60. I was diagnosed in January of this year with malignant melanoma (the kind of skin cancer that can be deadly) and subsequently I quickly had surgery to remove the cancer. All went well and thankfully due to early detection (have your skin checked folks!!) we caught the cancer early enough so that I did not have to have chemotherapy, just the surgery and followups with the dermatology doctor every 6 months going forward. So pretty happy about how this cancer adventure was resolved. But because of the stress of the cancer diagnosis, the surgery and also while managing a chronic pain condition called CRPS, my stress levels elevated big time and I'm pretty sure that stress may have contributed to the return of my Colitis, with stress being a known trigger, as Tex noted in his book. The diarrhea isn't as bad as when I had the parasite and when I was first diagnosed with MC, but they it has been slowly getting worse over the last 3 months and seem to only respond slightly to Imodium and Pepto, which I often take in concert.
So about 6 weeks ago, I ordered more Budesonide from "All Day Chemist". I ordered it not being sure if I would actually get to the point of needing to go on it as I was trying to treat it more conservatively, but today I have decided that the symptoms are severe enough to start it once again. It has become a significant quality of life issue. I have used All Day Chemist twice before with very good service and their pricing on their Budesonide (Budez CR is the name of their product) can't be beat. It is priced at about 10% of what I would pay from my pharmacy and that is with Medicare and good Part D drug plan! Just so you guys know, shipping from All Day Chemist has slowed a bit with COVID-19 so instead of the 2 week shipping which I experienced the first two times, this time it took about 5 weeks from order to door but I am still very happy with them. So plan accordingly if you need to order from them.
So I have three questions for you.
1. As this seems to be more than a flare but a bit less than a total relapse, should I start with 9 mg (3 capsules a day) or do you guys think I should start with 6 mg (2 capsules a day). I have seen some conflicting dosage strategies for recurrence.
2. Should I follow the very slow taper once again after I hopefully achieve remission as I did initially? Just wondering if the same dosage strategy should apply for flares or a relapse as it does for initial treatment of MC.
3. I have some older Budesonide that has an expiration date of November, 2018. Do you think it would be okay to take this? I think I remember seeing some reference to expired budesonide still being good. I just wanted to run this by you again. Not worried about safety with the expiration as much as I'm worried about efficacy of the drug. It is still in the sealed blister packs.
Thanks in advance and stay well my friends........we for sure are living in interesting times.
"Flare-Lapse" ??
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi,
Sorry that you're having a relapse, but glad that you caught the melanoma in time.
To skip to the chase, here are my observations, opinions, or best guesses (whatever you wish to call them).
Relapses that have lasted for more than a few days are often just as difficult to stop as our original reactions/flares. Therefore, treating (or managing) flares can be just as difficult as it was to reach remission initially.
In a nutshell, you will find that in most cases, a budesonide treatment of a flare will need to be initiated with a full dose, but you may be able to taper the dose much faster (depending on your response). You might need to go back to the same restrictive diet that you used initially. Some members have found it necessary to cut out supplements, also.
I suspect that you will find that budesonide (dated Nov., 2018) is still at least 99.99% effective. Those fake expiration dates are used to increase the profits of the pharmaceutical industry. They have nothing to do with the effectiveness or safety of the drug itself. When a pharmacy dispenses a drug, it automatically dates the drug to expire in a year, because that's when the doctor's prescription expires (at least that's the custom here in the US). Most drugs still have good efficacy around (70–80 %) even when they've been stored for 30 or 40 years (if they've been stored properly).
Thanks for the updated information on ordering from All Day Chemist, and good luck with your recovery.
Tex
Sorry that you're having a relapse, but glad that you caught the melanoma in time.
To skip to the chase, here are my observations, opinions, or best guesses (whatever you wish to call them).
Relapses that have lasted for more than a few days are often just as difficult to stop as our original reactions/flares. Therefore, treating (or managing) flares can be just as difficult as it was to reach remission initially.
In a nutshell, you will find that in most cases, a budesonide treatment of a flare will need to be initiated with a full dose, but you may be able to taper the dose much faster (depending on your response). You might need to go back to the same restrictive diet that you used initially. Some members have found it necessary to cut out supplements, also.
I suspect that you will find that budesonide (dated Nov., 2018) is still at least 99.99% effective. Those fake expiration dates are used to increase the profits of the pharmaceutical industry. They have nothing to do with the effectiveness or safety of the drug itself. When a pharmacy dispenses a drug, it automatically dates the drug to expire in a year, because that's when the doctor's prescription expires (at least that's the custom here in the US). Most drugs still have good efficacy around (70–80 %) even when they've been stored for 30 or 40 years (if they've been stored properly).
Thanks for the updated information on ordering from All Day Chemist, and good luck with your recovery.
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.
Hi Tommy,
I used budesonide initially but never for a reflare. Since you no how important the food is I think you will respond pretty quickly.
1. I'd be inclined to start with 3 to get things under control. You may only need 3 for 3 days, 5 days, or couple of weeks. I"d step down to 2 when you get solid stool.
2. I'm not really sure how to respond to question 2. Since you know what it takes in terms of food I don't think you will need to do the excruciatingly long taper we usually recommend but clearly you will still need a taper.
Hopefully someone else will respond to question 2.
My experience with a reflare (did not use budesonide) was that I had the reflare for about 9 months and was kind of clueless thinking it would stop on its own. Once I got really
serious with diet I went into remission in a couple of weeks.
Brandy
I used budesonide initially but never for a reflare. Since you no how important the food is I think you will respond pretty quickly.
1. I'd be inclined to start with 3 to get things under control. You may only need 3 for 3 days, 5 days, or couple of weeks. I"d step down to 2 when you get solid stool.
2. I'm not really sure how to respond to question 2. Since you know what it takes in terms of food I don't think you will need to do the excruciatingly long taper we usually recommend but clearly you will still need a taper.
Hopefully someone else will respond to question 2.
My experience with a reflare (did not use budesonide) was that I had the reflare for about 9 months and was kind of clueless thinking it would stop on its own. Once I got really
serious with diet I went into remission in a couple of weeks.
Brandy
Hi Tommy,
I reread your post and I don't think you will need a 9 month taper this time. Again, listen to your body but I'd project 4-5-6 months total on budesonide.
I'm glad your cancer is ok. It is certainly understandable that you had a lot of stress.
As you know diet is very key. Maybe reread Gabes comments on diet.
My 9 month reflare was also stress induced. It was never as bad as initial diagnoses as I had WD once a day vs 10 x per day. It wasn't until I got serious about diet, and took it down to
3 foods that I kicked into remission pretty quickly.
I reread your post and I don't think you will need a 9 month taper this time. Again, listen to your body but I'd project 4-5-6 months total on budesonide.
I'm glad your cancer is ok. It is certainly understandable that you had a lot of stress.
As you know diet is very key. Maybe reread Gabes comments on diet.
My 9 month reflare was also stress induced. It was never as bad as initial diagnoses as I had WD once a day vs 10 x per day. It wasn't until I got serious about diet, and took it down to
3 foods that I kicked into remission pretty quickly.
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tommyboywalker
- Adélie Penguin
- Posts: 126
- Joined: Tue Jan 23, 2018 3:49 pm
Tex and Brandy, thank you very much for your responses!
Your replies solidify my plan on treatment. I will take 9 mg Budesonide daily to start and then taper slowly but accordingly depending on symptoms. I know that every individual may be different and what I experienced initially may not be how I respond with this recurrence. I definitely plan on using the older Budesonide first. Thanks Tex for your thoughts on expired meds.
The one silver lining about treatment this time around is that thanks to all you folks on this forum and Tex's book, I am far more educated, informed and confident going into treating this recurrence than I was initially. And I absolutely, positively understand the importance of diet being the cornerstone here! While I have not wavered from being gluten free and dairy free since my initial diagnosis, there certainly are areas of my diet that I can once again tighten up and control while I get the MC under control once again. I have cut out most supplements except some daily vitamin C and D. I need the C to help prevent spread of my Complex Regional Pain Syndrome and I need the D just to keep that vitamin level in a healthy range.
My stress is once again mostly under control after the cancer scare (thanks for your kind thoughts on that) and I'm sleeping much better and those improvements should hopefully be helpful to me in my healing as well. I am also back to doing some daily mindfulness meditation, which I started doing years ago as a coping mechanism for my chronic pain but I have since found that it really helps in all aspects of my life. 15 minutes a day, I definitely can make time for that. I find it interesting that both my CRPS and my Colitis flared at almost exactly the same time, a time of very high stress in my life. Coincidence? I don't think so. What I have learned through decades now with multiple chronic health issues is that importance of the "mind-body" connection cannot be overstated. Oh, and always be grateful....that helps too.
It always feels good to have a plan, that helps with the confidence too. I'll keep you all posted. Stay safe and well and thanks again.
Your replies solidify my plan on treatment. I will take 9 mg Budesonide daily to start and then taper slowly but accordingly depending on symptoms. I know that every individual may be different and what I experienced initially may not be how I respond with this recurrence. I definitely plan on using the older Budesonide first. Thanks Tex for your thoughts on expired meds.
The one silver lining about treatment this time around is that thanks to all you folks on this forum and Tex's book, I am far more educated, informed and confident going into treating this recurrence than I was initially. And I absolutely, positively understand the importance of diet being the cornerstone here! While I have not wavered from being gluten free and dairy free since my initial diagnosis, there certainly are areas of my diet that I can once again tighten up and control while I get the MC under control once again. I have cut out most supplements except some daily vitamin C and D. I need the C to help prevent spread of my Complex Regional Pain Syndrome and I need the D just to keep that vitamin level in a healthy range.
My stress is once again mostly under control after the cancer scare (thanks for your kind thoughts on that) and I'm sleeping much better and those improvements should hopefully be helpful to me in my healing as well. I am also back to doing some daily mindfulness meditation, which I started doing years ago as a coping mechanism for my chronic pain but I have since found that it really helps in all aspects of my life. 15 minutes a day, I definitely can make time for that. I find it interesting that both my CRPS and my Colitis flared at almost exactly the same time, a time of very high stress in my life. Coincidence? I don't think so. What I have learned through decades now with multiple chronic health issues is that importance of the "mind-body" connection cannot be overstated. Oh, and always be grateful....that helps too.
It always feels good to have a plan, that helps with the confidence too. I'll keep you all posted. Stay safe and well and thanks again.
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Pebbledash
- Gentoo Penguin
- Posts: 260
- Joined: Sun Aug 11, 2013 1:37 pm
Hi Tommy,
I hesitate to say "welcome back," but you know what I mean! Congratulations on recovering from the cancer scare.
I just wanted to add my own purely anecdotal evidence. Back when I was on my first round of budesonide, which proved highly effective from the first couple of days onward, I am sure it was stress (work and life-related) that trigger my relapse.
Perhaps (and I'm really hedging here, most definitely not an expert), there is some utility in folks like us taking budesonide at a low dose before symptoms have time to really kick-in (or, in my case, upping my dose since I'm still on it) at the earliest sign of stress.
Cheers
Paul
PS my own consultant had no worries about my using budesonide that was 6 months past its date.
I hesitate to say "welcome back," but you know what I mean! Congratulations on recovering from the cancer scare.
I just wanted to add my own purely anecdotal evidence. Back when I was on my first round of budesonide, which proved highly effective from the first couple of days onward, I am sure it was stress (work and life-related) that trigger my relapse.
Perhaps (and I'm really hedging here, most definitely not an expert), there is some utility in folks like us taking budesonide at a low dose before symptoms have time to really kick-in (or, in my case, upping my dose since I'm still on it) at the earliest sign of stress.
Cheers
Paul
PS my own consultant had no worries about my using budesonide that was 6 months past its date.
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tommyboywalker
- Adélie Penguin
- Posts: 126
- Joined: Tue Jan 23, 2018 3:49 pm
Hey Paul,
Great to see you on the forum.....well, you know what I mean! Yup, this is such a great resource for folks like us. I just saw your recent post here.
Seems like we are "Budesonide Buddies" lately! I hadn't given any thought to taking the medication preventatively in the event of high stress. It's the classic "risk vs benefit" question. We know there is value in this drug reducing GI inflammation, but yet want to take the least amount necessary to maintain our quality of life. But knowing exactly what/when/how much to take it is always a moving target, isn't it!
Anyways, the GI doctor that I put the most faith in for Microscopic Colitis is Dr. Darrell Pardi at the Mayo Clinic in Rochester. Look for his video on YouTube if you want to see how he treats. My personal GI doctor in St. Cloud MN trained under Dr. Pardi. First off, I was lucky to get a GI doctor that understands the importance of diet in treating MC as many GI doctors don't seem to grasp that concept. Secondly, both the veterans on this forum and Dr. Pardi and my doctor seem to be in agreement. Treat relapses that can't be brought under control with a full dose of Budesonide and then taper slowly to the lowest possible dose that controls the symptoms. Easier said than done though, right?? That magic dosage can vary for everybody! And with Budesonide being known to suppress the immune system, (not a great thing with a global pandemic) obviously we don't want to be taking more of the drug than is necessary. So some experimentation is likely going to have to be in play here.
All the best to you Paul. Stay well and take good care. Cheers........
Great to see you on the forum.....well, you know what I mean! Yup, this is such a great resource for folks like us. I just saw your recent post here.
Seems like we are "Budesonide Buddies" lately! I hadn't given any thought to taking the medication preventatively in the event of high stress. It's the classic "risk vs benefit" question. We know there is value in this drug reducing GI inflammation, but yet want to take the least amount necessary to maintain our quality of life. But knowing exactly what/when/how much to take it is always a moving target, isn't it!
Anyways, the GI doctor that I put the most faith in for Microscopic Colitis is Dr. Darrell Pardi at the Mayo Clinic in Rochester. Look for his video on YouTube if you want to see how he treats. My personal GI doctor in St. Cloud MN trained under Dr. Pardi. First off, I was lucky to get a GI doctor that understands the importance of diet in treating MC as many GI doctors don't seem to grasp that concept. Secondly, both the veterans on this forum and Dr. Pardi and my doctor seem to be in agreement. Treat relapses that can't be brought under control with a full dose of Budesonide and then taper slowly to the lowest possible dose that controls the symptoms. Easier said than done though, right?? That magic dosage can vary for everybody! And with Budesonide being known to suppress the immune system, (not a great thing with a global pandemic) obviously we don't want to be taking more of the drug than is necessary. So some experimentation is likely going to have to be in play here.
All the best to you Paul. Stay well and take good care. Cheers........