Hi friends!
I was stunned to get on here this morning and realize I haven't posted here for five years! But my GI is considering putting me on Imuran, and I trust some of you here implicitly. So here's my story at this point:
I've had chronic WD for maybe 15 years. I was diagnosed with MC in January 2012, and promptly stopped taking ibuprofen and went GF. Shortly after that I discovered this board. In May of 2012 I sent stool samples to Enterolab; results showed that I had two copies of a gene for gluten sensitivity (HLA-DQB1*0303 and 0603), and that I was reactive to gluten (34) and dairy (32) and slightly reactive to egg (11), but not to soy (5). I immediately eliminated any residual gluten (changing my pan sets, etc.), as well as dairy and egg. And thanks to this board, I also watched my reactions carefully and determined I was also reacting to soy, regardless of what the test said, so I eliminated that as well.
In the meantime my doctor had tried the Pepto-Bismol protocol, but I developed severe tinnitus (which I also get from aspirin). That ruled out treatment with any salicylates. So in May of 2012 he put me on budesonide, which I found worked pretty well as long as I took at least 2 pills/day. Every time I tried to drop to 1 pill/day, I lost control again. So my doctor allowed me to stay on 2/day for quite a while. But eventually that doctor retired, and in November of 2014 I got a call from Kaiser gastroenterology saying they would no longer approve the budesonide, and I would have to find a new doctor. (UGH!)
I ended up with a partner in the same doctor's office, but he did not know me or my history, and he did not really know MC very well. It has taken me some time, but gradually I have helped this doctor understand that I react dramatically to gluten and dairy, even in small amounts. Eventually a couple of years ago he came to the place where he said, "If you are reacting to it, you should stay away from it." In the meantime I think my case has encouraged him to do some additional research, because when I went in to see him last week, he actually acknowledged that gluten (at least) can cause MC patients to react. He had studied my chart carefully and I found he really seemed to understand the big picture.
But over these last few years without budesonide, even on a very strict diet, and even going back and eliminating almonds and peanuts as well, my MC has gotten to the point where it is making me miserable. WD 10-15 times/day, waking me up several times/night, even some accidents both at night and during the day - many of you know the drill. When I made last week's appointment with my GI dr, he had been booked for three weeks, so he put me on budesonide in the meantime - so I am finally feeling better again.
At Wednesday's appointment, we evaluated my options again. We've eliminated the possibility of salicylates of any kind. I can't tolerate cholestyramine and didn't get any help from it anyway. I could take what my doctor calls, "chronic budesonide," but it's not recommended at the dosage I need it (at least 2/day) for long-term use (like years) - and I get habituated to it eventually so even 2/day isn't enough. And my doctor said, "I think when you drop to 1/day again, you'll find the same results you have in the past, and will lose control again." A couple of years ago he had been wanting to do another colonoscopy (it's been 6 years since my last one), but this week he told me he doesn't think I need it; he said the way I respond to budesonide is "diagnostic in itself."
So that brings us to the current question: what now? My doctor is recommending we try Imuran. I respect him, I feel like he is listening and is treating my MC basically the way the people here think is effective. I'm frankly rather nervous about taking an immunosuppressant, but I'm not sure what other option I have. I need my life back! And I'm already super-strict on the diet and not sure what more I'm willing to eliminate (nor would I know what to eliminate if I did). I think from the couple of posts I've seen here, that really does seem to be the next step given how intractable my MC is. Tex, and some of you others who've been around this a while, what do you think?
Imuran/Azathioprine?
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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Deanna in CO
- Adélie Penguin
- Posts: 220
- Joined: Mon Feb 20, 2012 2:16 pm
- Location: Colorado
Deanna,
How old are you?
To my mind long term use of Uceris or Entocort is more of an option for an older person but less of an option for someone say at age 20. Mayo Clinic has some studies published in which they are ok with long term use of budesonide in a maintenance dose. I think you can click around on their website or google to find the studies if you need them for your doctor.
Have you tried Uceris? (It is a variation of budesonide.) I think Uceris is considered to be considered a bit safer for long term use as it is less systemic.
Have you tried the antihistamines?
Are you on any other prescription drugs that would prevent remission?
Have you discontinued all oral supplements?
I believe Joe and another woman who shared the same GI doc in the northeast have used Imuran. The posts about this would be about year 2011 or 2012. If I remember correctly the woman who took Immuran took it for about 7 months and then followed it up with a long stint on budesonide (i.e. she still needed the budesonide after she discontinued the Imuran.) Another member from the Tampa area used immunosuppressants and she is now in palliative care as a side effect of the immunosuppressants, i.e. dying.
Suggest search Imuran on the forum. (Not sure if I have it spelled correct.y.
I think typically the forum does not recommend the immunosuppressants due to the risks.
Also--there are several brands/forms of the cholestyramine. You might message Polly about this if one brand did not work.
Brandy
How old are you?
To my mind long term use of Uceris or Entocort is more of an option for an older person but less of an option for someone say at age 20. Mayo Clinic has some studies published in which they are ok with long term use of budesonide in a maintenance dose. I think you can click around on their website or google to find the studies if you need them for your doctor.
Have you tried Uceris? (It is a variation of budesonide.) I think Uceris is considered to be considered a bit safer for long term use as it is less systemic.
Have you tried the antihistamines?
Are you on any other prescription drugs that would prevent remission?
Have you discontinued all oral supplements?
I believe Joe and another woman who shared the same GI doc in the northeast have used Imuran. The posts about this would be about year 2011 or 2012. If I remember correctly the woman who took Immuran took it for about 7 months and then followed it up with a long stint on budesonide (i.e. she still needed the budesonide after she discontinued the Imuran.) Another member from the Tampa area used immunosuppressants and she is now in palliative care as a side effect of the immunosuppressants, i.e. dying.
Suggest search Imuran on the forum. (Not sure if I have it spelled correct.y.
I think typically the forum does not recommend the immunosuppressants due to the risks.
Also--there are several brands/forms of the cholestyramine. You might message Polly about this if one brand did not work.
Brandy
Deanna,
It sounds as though you do indeed have a good doctor. I was going the ask the same question that Brandy asked. Have you and your doctor considered Uceris. According to the manufacturer, it has absolutely no systemic effects. If it would work for you, it might be an option. But I could be wrong — your doctor may know of research that shows that it still carries osteoporosis and adrenal risks. And I suppose one would still have the risk of progressive loss of effectiveness. Also, I'm unaware of any long-term trials to prove that it's safe for long-term use.
The right kind of cholestyramine might work. One reason why glucocorticoids (corticosteroids) work so well is because not only do they suppress mast cell activity, but research shows that cortisol regulates bile acid uptake. That's why corticosteroids cause weight gain — instead of losing fecal fat (emulsified by bile), people taking a corticosteroid are able to recover and absorb that fat (instead of flushing it down the toilet). Anyone taking cholestyramine loses that fat.
Age is a consideration, but IMO the long-term health risk of constant watery diarrhea (to say nothing of the effect it has on quality of life) probably trumps age in this situation when deciding what to do. As much as I hate immune system suppressants, I believe I would opt for the Imuran if budesonide or Uceris is not an option.
But that's just my opinion.
Tex
It sounds as though you do indeed have a good doctor. I was going the ask the same question that Brandy asked. Have you and your doctor considered Uceris. According to the manufacturer, it has absolutely no systemic effects. If it would work for you, it might be an option. But I could be wrong — your doctor may know of research that shows that it still carries osteoporosis and adrenal risks. And I suppose one would still have the risk of progressive loss of effectiveness. Also, I'm unaware of any long-term trials to prove that it's safe for long-term use.
The right kind of cholestyramine might work. One reason why glucocorticoids (corticosteroids) work so well is because not only do they suppress mast cell activity, but research shows that cortisol regulates bile acid uptake. That's why corticosteroids cause weight gain — instead of losing fecal fat (emulsified by bile), people taking a corticosteroid are able to recover and absorb that fat (instead of flushing it down the toilet). Anyone taking cholestyramine loses that fat.
Age is a consideration, but IMO the long-term health risk of constant watery diarrhea (to say nothing of the effect it has on quality of life) probably trumps age in this situation when deciding what to do. As much as I hate immune system suppressants, I believe I would opt for the Imuran if budesonide or Uceris is not an option.
But that's just my opinion.
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 Deanna,
I remembered the name of the woman who was on Imuran. I think it was Nancy. If you search Imuran on here I'm sure you will find a link with her name. Joe also took Imuran but he is pretty busy and has a lot going on. I'd probably email or message Nancy about her Imuran experiences but you could also check with Joe. He is a really smart guy. I believe that both Joe and Nancy's experiences on Imuran were positive. They shared the same doctor in the northeast. I would message them and get their feedback.
Agree with Tex....your doctor does sound like he knows what he is doing and understands the drugs and the implications.
Also agree with Tex....untreated MC for years and years and years has got to be bad on bone density, brain health, joint health and other areas of the body. Plus there is no quality of life with untreated MC. You and your doctors have done "due diligence." You have been on/tried all of the recommended drugs for MC: Pepto bismol, cholestyramine, and budesonide.
Sometimes it comes down to quality of life and what gets you the best quality of life.
Please keep us posted. Brandy
I remembered the name of the woman who was on Imuran. I think it was Nancy. If you search Imuran on here I'm sure you will find a link with her name. Joe also took Imuran but he is pretty busy and has a lot going on. I'd probably email or message Nancy about her Imuran experiences but you could also check with Joe. He is a really smart guy. I believe that both Joe and Nancy's experiences on Imuran were positive. They shared the same doctor in the northeast. I would message them and get their feedback.
Agree with Tex....your doctor does sound like he knows what he is doing and understands the drugs and the implications.
Also agree with Tex....untreated MC for years and years and years has got to be bad on bone density, brain health, joint health and other areas of the body. Plus there is no quality of life with untreated MC. You and your doctors have done "due diligence." You have been on/tried all of the recommended drugs for MC: Pepto bismol, cholestyramine, and budesonide.
Sometimes it comes down to quality of life and what gets you the best quality of life.
Please keep us posted. Brandy
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Deanna in CO
- Adélie Penguin
- Posts: 220
- Joined: Mon Feb 20, 2012 2:16 pm
- Location: Colorado
Hi Brandy!
Thanks for your quick answer.
I am 52. Definitely not 20 any more, but still young enough that I probably have a lot of years left to be on a maintenance dose. If I could get by on 1 pill/day, both my doctor and I would be a lot happier about me staying on the Entocort; since I lose control with less than 2/day, we are less comfortable with that option.
I have not tried Uceris. I will ask my doctor about that. Not sure if it's on Kaiser's formulary, but it might be worth a try.
I do take antihistamines: 10 mg Singulair (montelukast) in the morning and 10 mg Claritin Reditabs at night. They help my seasonal allergies but don't seem to impact my MC either way.
I don't take a lot of prescription meds other than Singulair, except occasionally I take Imitrex for migraines.
Oral supplements: I take 1000 mg vitamin C, mainly because when I've taken it for colds it seems to also help my MC. The rest of the time it doesn't seem to make any difference. I also take vitamin D3. I don't take anything else. Any supplements I take, I read labels carefully to be sure they don't contain anything I react to.
I appreciate the other feedback about Imuran and about cholestyramine. The brand of cholestyramine my doctor prescribed, I literally cannot swallow - I think it's the only medication I've ever tried that I simply can't get down and keep down. I managed to take a few doses the first time he prescribed it, and it didn't seem to help at all. I will ask him if there's another kind.
And thanks for the referrals to Joe and Nancy. I remember them from when I was on the board years ago. I will definitely message them. :)
Thanks for your quick answer.
I am 52. Definitely not 20 any more, but still young enough that I probably have a lot of years left to be on a maintenance dose. If I could get by on 1 pill/day, both my doctor and I would be a lot happier about me staying on the Entocort; since I lose control with less than 2/day, we are less comfortable with that option.
I have not tried Uceris. I will ask my doctor about that. Not sure if it's on Kaiser's formulary, but it might be worth a try.
I do take antihistamines: 10 mg Singulair (montelukast) in the morning and 10 mg Claritin Reditabs at night. They help my seasonal allergies but don't seem to impact my MC either way.
I don't take a lot of prescription meds other than Singulair, except occasionally I take Imitrex for migraines.
Oral supplements: I take 1000 mg vitamin C, mainly because when I've taken it for colds it seems to also help my MC. The rest of the time it doesn't seem to make any difference. I also take vitamin D3. I don't take anything else. Any supplements I take, I read labels carefully to be sure they don't contain anything I react to.
I appreciate the other feedback about Imuran and about cholestyramine. The brand of cholestyramine my doctor prescribed, I literally cannot swallow - I think it's the only medication I've ever tried that I simply can't get down and keep down. I managed to take a few doses the first time he prescribed it, and it didn't seem to help at all. I will ask him if there's another kind.
And thanks for the referrals to Joe and Nancy. I remember them from when I was on the board years ago. I will definitely message them. :)
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Deanna in CO
- Adélie Penguin
- Posts: 220
- Joined: Mon Feb 20, 2012 2:16 pm
- Location: Colorado
Tex,
Thank you! Once again - as I've found many times before - your advice is invaluable.
I think I will ask my doctor if there are any other options for cholestyramine. I had to have my gallbladder removed a number of years ago (but after I was diagnosed with MC); I didn't notice my MC getting worse at the time, but there's certainly a possibility that a bile acid sequestrant might be helpful now. I hate the thought of taking it, and I definitely can't take the stuff I tried last time (a generic for Prevalite), but maybe there's something else I could get down. (Is Prevalite the one that can have something in it that we react to - gluten or dairy?)
And as far as quality of life is concerned, my doctor and I were talking about other health conditions, and I said, "I'm really in pretty good health; I know a lot of people my age who are worse off than I am." I knew he was a good doctor when his response was, "Yes, but this condition (MC) can be crippling"! A GI doc who actually gets it! :)
I will keep thinking about the Imuran. In the meantime I will talk to my doctor about Uceris and about other options for cholestyramine. Maybe there is still a possibility of avoiding an immunosuppressant.
Thank you again!
Thank you! Once again - as I've found many times before - your advice is invaluable.
I think I will ask my doctor if there are any other options for cholestyramine. I had to have my gallbladder removed a number of years ago (but after I was diagnosed with MC); I didn't notice my MC getting worse at the time, but there's certainly a possibility that a bile acid sequestrant might be helpful now. I hate the thought of taking it, and I definitely can't take the stuff I tried last time (a generic for Prevalite), but maybe there's something else I could get down. (Is Prevalite the one that can have something in it that we react to - gluten or dairy?)
And as far as quality of life is concerned, my doctor and I were talking about other health conditions, and I said, "I'm really in pretty good health; I know a lot of people my age who are worse off than I am." I knew he was a good doctor when his response was, "Yes, but this condition (MC) can be crippling"! A GI doc who actually gets it! :)
I will keep thinking about the Imuran. In the meantime I will talk to my doctor about Uceris and about other options for cholestyramine. Maybe there is still a possibility of avoiding an immunosuppressant.
Thank you again!
Deanna,
I believe the type of cholestyramine that most people have good results from is the regular type (not the lite version) made by Sandoz.
Tex
I believe the type of cholestyramine that most people have good results from is the regular type (not the lite version) made by Sandoz.
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.