I started cholestyramine 10 days ago. So far, it has made the number of urgency trips decrease from 10+ to 5-6. Still liquid in consistency. Do I need more time to evaluate the effectiveness of this for me, or should I assume it is not really helping?
I went back to the GI last week and that was my first contact with her since 2013 when I tried steroids that didn't work for me. I have had 4ish years of remission through diet restrictions that I learned from Enterolab testing and this site. However, since November, I have not had success, not matter what I eliminate.
She also gave me samples of Viberzi and EnteraGam (this is a medical food?) to try. I have only tried the cholestyramine at this point in order to evaluate effectiveness. Has anyone had experience with either of these other products?
I am at my wit's end....
Cholestyramine
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darlagroat
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Pebbledash
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I am in a similar position; I barely manage my condition with Budesonide. I am thinking of trying a steroid-sparing regime.
Imuran seems to have the least side-effects, although Humira is another possibility (though I worry about MS as a possible side-effect?).
Entyvio has been mentioned on this forum too.
If anyone has tried any of these I would be interested.
Paul
Imuran seems to have the least side-effects, although Humira is another possibility (though I worry about MS as a possible side-effect?).
Entyvio has been mentioned on this forum too.
If anyone has tried any of these I would be interested.
Paul
Hi Paul,
I take Humira and couldn't be happier with the results. It was a big decision for me but it's been life changing. My doc and I originally wanted to trial Entyvio but the insurance didn't approve it.
Most docs use the "step-up" approach, which is steroids (which work for most people). If steroids aren't working then you can switch to Methotrexate or Imuran. I tried Methotrexate which did not work for me, but my dr. said he's had a lot of success with it in MC (he's at a large teaching hospital and we have a good relationship so I trust his opinion). After a bit we decided together to go to a biologic. We agreed on Entyvio, but the insurance selected Humira for me (so it goes).
I was incredibly(!!!) nervous and thought about ALL of the side effects but it's been great. I was in remission within 8 weeks with weekly injections.
Now I'm working to get off the Humira, which I'm doing by extending the injections (so now I inject every 10 days instead of every 7). I still monitor my diet very carefully and keep in regular contact with my GI.
Like you, I'm on some medications for other conditions -- so one of my doctor's theories is that those medications were never going to allow me to truly get well so I needed a stronger drug. My hope is to some day fully get off the Humira but I'm very grateful that it's an option I have now.
Let me know if I can answer any other questions for you. Wishing you well!
I take Humira and couldn't be happier with the results. It was a big decision for me but it's been life changing. My doc and I originally wanted to trial Entyvio but the insurance didn't approve it.
Most docs use the "step-up" approach, which is steroids (which work for most people). If steroids aren't working then you can switch to Methotrexate or Imuran. I tried Methotrexate which did not work for me, but my dr. said he's had a lot of success with it in MC (he's at a large teaching hospital and we have a good relationship so I trust his opinion). After a bit we decided together to go to a biologic. We agreed on Entyvio, but the insurance selected Humira for me (so it goes).
I was incredibly(!!!) nervous and thought about ALL of the side effects but it's been great. I was in remission within 8 weeks with weekly injections.
Now I'm working to get off the Humira, which I'm doing by extending the injections (so now I inject every 10 days instead of every 7). I still monitor my diet very carefully and keep in regular contact with my GI.
Like you, I'm on some medications for other conditions -- so one of my doctor's theories is that those medications were never going to allow me to truly get well so I needed a stronger drug. My hope is to some day fully get off the Humira but I'm very grateful that it's an option I have now.
Let me know if I can answer any other questions for you. Wishing you well!
Regarding the Cholestyramine....it can take up to 28 days for the body to adjust and to know if it is going to work for you. It took about right up to the 28th day for me to start seeing results, stick with it...it feels fruitless but it can help it just doesn't happen like magic.
The majority of successful healing really does come down to eating basic safe ingredients and then after adequate healing time (anywhere from 1-3 years) introducing a new food in every once in a while is the best approach to a newly healing leaky gut. If medications are not completing the 'normal' feeling then one needs to re-evaluate what they are eating, their stress level, if they are getting good VitD, and Magnesium daily, are they as Gluten, Dairy, Soy and Egg free as they can possibly be, and hopefully somewhere in there the answer lies.
I have healed without medication, not saying this is for everyone, but it can be done. I have normal stress in my life too as well as hormone shifts, mental breakdowns, viruses/colds, environmental histamine hits....I feel I've had it all, I've even taken cholestyramine for a good long stretch.....I've had to go over, around and through mountains with this MC....but in the end we can all get there, have faith in yourself.
Progress....not Perfection
The majority of successful healing really does come down to eating basic safe ingredients and then after adequate healing time (anywhere from 1-3 years) introducing a new food in every once in a while is the best approach to a newly healing leaky gut. If medications are not completing the 'normal' feeling then one needs to re-evaluate what they are eating, their stress level, if they are getting good VitD, and Magnesium daily, are they as Gluten, Dairy, Soy and Egg free as they can possibly be, and hopefully somewhere in there the answer lies.
I have healed without medication, not saying this is for everyone, but it can be done. I have normal stress in my life too as well as hormone shifts, mental breakdowns, viruses/colds, environmental histamine hits....I feel I've had it all, I've even taken cholestyramine for a good long stretch.....I've had to go over, around and through mountains with this MC....but in the end we can all get there, have faith in yourself.
Progress....not Perfection
To Succeed you have to Believe in something with such a passion that it becomes a Reality - Anita Roddick
Dx LC April 2012 had symptoms since Aug 2007
Dx LC April 2012 had symptoms since Aug 2007
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Pebbledash
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Wow, Lisa, you're a mine of information. I did not know Humira was injected--gulp!Lisa_D wrote:Hi Paul,
I take Humira and couldn't be happier with the results. It was a big decision for me but it's been life changing. My doc and I originally wanted to trial Entyvio but the insurance didn't approve it.
Most docs use the "step-up" approach, which is steroids (which work for most people). If steroids aren't working then you can switch to Methotrexate or Imuran. I tried Methotrexate which did not work for me, but my dr. said he's had a lot of success with it in MC (he's at a large teaching hospital and we have a good relationship so I trust his opinion). After a bit we decided together to go to a biologic. We agreed on Entyvio, but the insurance selected Humira for me (so it goes).
I was incredibly(!!!) nervous and thought about ALL of the side effects but it's been great. I was in remission within 8 weeks with weekly injections.
Now I'm working to get off the Humira, which I'm doing by extending the injections (so now I inject every 10 days instead of every 7). I still monitor my diet very carefully and keep in regular contact with my GI.
Like you, I'm on some medications for other conditions -- so one of my doctor's theories is that those medications were never going to allow me to truly get well so I needed a stronger drug. My hope is to some day fully get off the Humira but I'm very grateful that it's an option I have now.
Let me know if I can answer any other questions for you. Wishing you well!
Your paraphrase of your doctor's advice regarding those on medications for multiple conditions--"medications were never going to allow me to truly get well"--is an absolute revelation to me.
Perhaps, to a degree, I am aiming for an unobtainable goal, and I need to adjust to the kind of relative success rate I am likely to have. Even though I am not well right now, with basically water-Diarrhea, at least my bathroom visits are relatively few compared to when I have been at my lowest, and, for the most part, I can hang on before I get to the bathroom.
Thanks for your wise words. There are many days when I wish I had taken out the option for a teaching hospital when I chose my insurance coverage--as a Brit in the US I just did not understand all the coverage options and went for the cheapest!! That was when I was younger and healthier.
I am going to follow up with my gastro about Imuran for sure.
Could you give me a down-and-dirty response to the following questions:
1. In terms of the steroid-sparing regimes, what does one mean by the "biologic" medications?
2. And I presume therefore that Imuran is a non-steroid but also non-biologic? Are there two different categories of non-steroid options?
In short, I'm asking about the major distinctions between the various non-steroid regimes so I can get a footing.
Cheers
Paul
Paul,
Biologic medications are typically saved for the most severe disease. So a “step-up” approach of treating MC typically looks like this:
Step 1: Steroids (Entocort and Uceris)
Step 2: Immunomodulators (Methotrexate and Imuran – there might be others, I’m not sure)
Step 3: Biologics (Entyvio and Humira are most common for Colitis but there are others)
Biologics cannot be taken be mouth, so they must be injected (Humira) or taken intravenously (Entyvio is a 30 minute IV you get at a clinic). I was definitely scared doing my first self-injection but it’s something that you get used to (and happy to talk about it if it ever comes to that). But importantly, it sounds like you’re not there yet!
It sounds like your next step is to talk with your doctor about trying out an Immunomodulator. I tried Methotrexate but several people on this board tried Imuran. Your GI might have a clear recommendation or you could review the pros/cons of each drug with your doc.
As I mentioned, I take 2 medications that are known to cause microscopic colitis (and I’ve been unable to get off of them or switch to different meds). So my other recommendation would be to review all of your current medications with your GI.
Let me know if I can help answer any other questions. I was sick for a year and half and definitely remember all the struggle and confusion. Wishing you well!
Biologic medications are typically saved for the most severe disease. So a “step-up” approach of treating MC typically looks like this:
Step 1: Steroids (Entocort and Uceris)
Step 2: Immunomodulators (Methotrexate and Imuran – there might be others, I’m not sure)
Step 3: Biologics (Entyvio and Humira are most common for Colitis but there are others)
Biologics cannot be taken be mouth, so they must be injected (Humira) or taken intravenously (Entyvio is a 30 minute IV you get at a clinic). I was definitely scared doing my first self-injection but it’s something that you get used to (and happy to talk about it if it ever comes to that). But importantly, it sounds like you’re not there yet!
It sounds like your next step is to talk with your doctor about trying out an Immunomodulator. I tried Methotrexate but several people on this board tried Imuran. Your GI might have a clear recommendation or you could review the pros/cons of each drug with your doc.
As I mentioned, I take 2 medications that are known to cause microscopic colitis (and I’ve been unable to get off of them or switch to different meds). So my other recommendation would be to review all of your current medications with your GI.
Let me know if I can help answer any other questions. I was sick for a year and half and definitely remember all the struggle and confusion. Wishing you well!
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Pebbledash
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Lisa
Duly copied and pasted and put with my notes--thanks for such a clear delineation! I'm scheduled to talk with my gastro next week, so your outline is super helpful--all these treatments were just a word-jumble in my head!
Would it be impertinent to ask what kinds of treatments you are on that seem to exacerbate your MC?
Oh, and another question: are the second and third line medications you list taken in tandem with Budesonide or can they be used as an independent treatment?
I seemed to have read online that Imuran, for example, takes a couple of months to kick-in and that it is taken as a supplement to steroid treatment.
Cheers
Paul
Duly copied and pasted and put with my notes--thanks for such a clear delineation! I'm scheduled to talk with my gastro next week, so your outline is super helpful--all these treatments were just a word-jumble in my head!
Would it be impertinent to ask what kinds of treatments you are on that seem to exacerbate your MC?
Oh, and another question: are the second and third line medications you list taken in tandem with Budesonide or can they be used as an independent treatment?
I seemed to have read online that Imuran, for example, takes a couple of months to kick-in and that it is taken as a supplement to steroid treatment.
Cheers
Paul
Paul,
I’m glad it’s helpful and I hope the appointment with your GI goes well!
I take Topiramate and Celexa to treat Bipolar Disorder. The medications have kept my mood stable, but my doctor has a strong suspicion that the Topiramate caused my MC. I still have days where I question all the meds, but the reality is they’re keeping me healthy. So I had to accept that I needed the Topiramate (at least for now, there may be a day when there’s a better/different treatment option) and I needed a stronger MC drug as well.
Mayo Clinic keeps a pretty good list of drugs that are known to be associated with MC. It’s at the bottom of this page:
https://www.mayoclinic.org/diseases-con ... c-20351478
Immunomodulators and Biologics and intended to be used without steroids. My GI used Budesonide as sort of a “bridge” until the Humira was working. What I mean is that when I started Humira, I was on Budesonide for the first 8 weeks until the Humira really started working. I honestly can’t quite remember Methotrexate (it was last summer and I was quite sick) but I imagine it was the same thing?
For some people these drugs do work faster, so don’t let the timelines discourage you. Methotrexate clearly wasn’t for me and I don’t think I even gave it the full 8 week trial; however I knew Humira was working within a few weeks. So you may know sooner than 8 weeks!
Let me know how it goes!
Best,
Lisa
I’m glad it’s helpful and I hope the appointment with your GI goes well!
I take Topiramate and Celexa to treat Bipolar Disorder. The medications have kept my mood stable, but my doctor has a strong suspicion that the Topiramate caused my MC. I still have days where I question all the meds, but the reality is they’re keeping me healthy. So I had to accept that I needed the Topiramate (at least for now, there may be a day when there’s a better/different treatment option) and I needed a stronger MC drug as well.
Mayo Clinic keeps a pretty good list of drugs that are known to be associated with MC. It’s at the bottom of this page:
https://www.mayoclinic.org/diseases-con ... c-20351478
Immunomodulators and Biologics and intended to be used without steroids. My GI used Budesonide as sort of a “bridge” until the Humira was working. What I mean is that when I started Humira, I was on Budesonide for the first 8 weeks until the Humira really started working. I honestly can’t quite remember Methotrexate (it was last summer and I was quite sick) but I imagine it was the same thing?
For some people these drugs do work faster, so don’t let the timelines discourage you. Methotrexate clearly wasn’t for me and I don’t think I even gave it the full 8 week trial; however I knew Humira was working within a few weeks. So you may know sooner than 8 weeks!
Let me know how it goes!
Best,
Lisa
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Pebbledash
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Hi Paul,
Yes, as long as you regulate when you take it relative to medications, supplements, and other nutrients (so that it doesn't cause any deficiencies), cholestyramine appears to be one of the safest medications available. Good to see that it's helping.
Tex
Yes, as long as you regulate when you take it relative to medications, supplements, and other nutrients (so that it doesn't cause any deficiencies), cholestyramine appears to be one of the safest medications available. Good to see that it's helping.
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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Pebbledash
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Re:
Lisa_D we have a very similar story (I am also on psych meds thought to interfere with MC recovery but found that stopping them didn't help). I was wondering if Humira is still working for you years later and/or if you successfully tapered? Did you ever try Entyvio? I just started Entyvio now for steroid refractory MC (CC since 2017, budesonide+cholestyramine since 2019 helps symptoms a little but doesn't solve the MC). I had to fight with insurance for 6 months to get Entyvio approved but the argument for it included the great safety profile so I don't know why the forum has so many people worried about side effects. So far I've had almost no side effects and I think it is starting to help but I have the third loading dose next week which is expected to kick it into high gear and then I'll know if it works or not. It's great to hear Humira worked for you!
Any updates you have Lisa_D on how you're doing would be great! Thanks so much for sharing your story in the forum and to everyone else for this community. Also Lisa_D if you're willing to share how/why insurance approved Humira for MC but not Entyvio I would be curious about that. Hopefully with time companies will change their policies regarding biologics and MC.
Thanks,
Antares